A significant aspect of providing positive behavioral support to individuals with developmental disabilities is proactive participation in community teams. Working together as a cohesive unit can help provide insight regarding positive behavioral support.
Teaming around an individual with challenging behaviors is important in that it helps to ensure full community membership for the person. There are several benefits to teaming which include:
- Providing a forum to proactively address issues that may arise.
- Meeting on an ongoing basis and celebrating a person's success can help the team identify and understand what is going well and why.
- By working together in a coordinated and supportive way you are better equipped to deal with conflicts that may arise.
- Teams that meet proactively are better able to create and update individual support plans.
- Well run teams are effective in finding resources, appropriate training, and expertise to blend mental health services within existing DD supports.
- Working proactively helps assure continued participation in supported community life.
When forming a team include those people important to the individual. They have a history and a story to share with others. As teams shift over time, having those key people to relay those stories to others is wonderful and necessary. Teams that use a person centered framework help focus what is important to the person. Effective teams are those that include a commitment to the person, positive communication skills, and being respectful of others even if they have individual differences of opinion.
Examples of teaming and developing person-centered plans (a plan to help guide the team in supporting the individual) can be found at The Learning Community and The Center for Evidenced-Based Practice.
People with developmental disabilities and allied mental health issues can be effectively supported in the community. When a number of providers are involved in the life of the individual it is important that the "team" develop a shared vision for this support. It is suggested that the team participate in regular meetings facilitated by a professional with expertise in DD/MH issues. One of the outcomes of these meetings should be a written behavior support plan (BSP).
Within a supported community lifestyle it is not uncommon for a number of providers from distinct programs to support the individual across their day/week. While the various providers will want to develop their own rapport, it is also important that there is some "thread of continuity" in the manner that each will interpret and support behavioral/mental health issues. If each provider has a different notion and approach we can inadvertently create more chaos in the life of the individual. A behavior support plan can assist in assuring this united approach across providers. Additionally there is often regular turnover in providers. The behavior support plan can effectively bridge the knowledge gap for new people coming into the life of the individual.
The plan should be authored in a straightforward manner so it is easily understood by direct providers and family members. The plan should be written concisely and to the point. Use of "people first" language is recommended. Also, avoid excessive use of psychiatric/psychological terms that may not be readily understood by direct providers and could stigmatize the individual. The plan should be updated on a regular basis as individuals grow emotionally or the team learns better ways to provide support. Data collection can be part of a plan and should be straightforward and not so time intensive that it would take away time from relating to the individual.
Individuals with developmental disabilities are all unique; their behavior and communication styles are diverse. Therefore, persons who work with individuals with developmental disabilities must adapt their approach and working style to meet the unique needs of each individual. Situational counseling is one approach that has been suggested to be an effective way to work with individuals with developmental disabilities, particularly for those staff in direct care positions. Since direct care staff intervene more often with persons with developmental disabilities than do professionals, the ability to work therapeutically with these individuals should be taught to them.
In the broadest sense, situational counseling can be defined as counseling techniques that are tailored to meet the needs of an individual in a particular situation. The challenge with situational counseling is that there is no standard formula to follow. However, the concept of situational counseling offers general guidelines that will assist staff in building a more positive and productive relationship with their clients within different contexts. First and foremost, direct care staff need to understand the individual's likes, dislikes, behavior patterns, personality, communication style, and interpersonal skills. This in conjunction with situational counseling will assist direct care staff to work more effectively with a diverse group of individuals in different settings.
Situational counseling consists of a number of different concepts and skills. These skills should be taught to direct care staff in training sessions before working with individuals with developmental disabilities and trainings can continually be provided throughout their work experience to increase their knowledge base. It is suggested these trainings consist of teaching main skills that can be understood so direct care staff can work with individuals with developmental disabilities effectively and it is also important for these staff to gain awareness about how their interactions can have an affect on the progress of persons with developmental disabilities.
(Excerpted and modified from Evaluation for and Use of Psychopharmacological Treatment in Crisis Intervention for People with Mental Retardation and Mental Illness. Zelenski, S. G. in Crisis Prevention & Response in the Community ed. Hanson, Wieseler, Lakin 2002. AAMR Press)
In his 2002 report, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation, 16th Surgeon General David Satcher delineated the unmet medical, psychiatric and dental needs of individuals with developmental disabilities who lived in the community. This report provided the impetus for a resurgence of energy to attack these deficiencies. Deficiencies in care included inadequately trained or experienced health care providers to deliver the level of care required. This article begins to deliver information to help remedy that deficiency.
In the individual with developmental disability and mental illness, a fragile balance exists between already disrupted, but basal physical functioning and the dysfunction of acute illness, whether physical or psychiatric. In a brain already sensitized by prior injury, what might not be of concern in the typical brain becomes a traumatic insult.
The importance of assessing multiple factors and using data-based assessment and management in treating acute or chronic dysfunctional behaviors in an individual with a developmental disability is emphasized here. The following is a discussion of an appropriate evaluation in complex clinical presentations.
A physician should always suspect physical explanations for any acute psychiatric signs or symptoms when working with a patient with a developmental disability. Table 1 lists some of the common physical causes of psychiatric signs or symptoms and by its name is intended to heighten the caregiver's sensitivity to pain/discomfort issues rather than psychiatric diagnosis as an important source of behavioral dysfunction.
|Head (EENT, Dental, Lymph nodes, Headache)|
|Urinary tract (calculi, infection, obstruction)|
|Reflux and other GI factors (constipation, obstipation, rectal ampulla problems)|
General Medical Conditions
In evaluating whether a general medical condition is responsible for a particular behavioral or psychiatric crisis, several important clinical clues are available. These include (a) the age of the first episode not being characteristic of the age of onset of the apparent condition, (b) the presence of coexisting physical illness known to cause psychiatric or behavioral symptoms (see Table 1 for a useful acronym), (c) a poor response to multiple psychotropic interventions, (d) a lack of family history of psychiatric illness, (e) a single acute episode, or (f) a change in mental status. While none of these alone clearly indicates a general medical condition as causing the crisis, they provide presumptive evidence suggesting further medical evaluation. Personal experience has revealed that approximately 15% of psychiatric referrals in the general population have a general medical condition that explains the psychiatric signs or symptoms, and more than 75% of psychiatric referrals in a mildly and moderately mentally retarded population have a general medical condition that could explain or contribute to the psychiatric signs or behavioral dysfunction responsible for the referral. Many of these were previously unrecognized medical conditions, such as infection, musculoskeletal problems, thyroid, and vision or hearing loss. Hall (1980) found that 5% of psychiatric patients had unrecognized medical disorders that were causative of psychiatric symptoms; 21% of patients had concomitant medical illnesses contributing to the psychiatric symptoms; and physical disease was found causing psychiatric symptoms in 42% of psychiatric outpatients. Similarly pain, loss of function, change in mouth sensation and discomfort are similar dental correlates to the above medical discussion. Good dental evaluation is an important part of any evaluation of "behavioral" symptoms.
Seizure-Related Behaviors - Seizure disorders have frequently been implicated in behavioral changes. The changes can be acute or chronic and can be debilitating and frequently difficult to diagnose (Manford et al., 1988). Partial seizures of the temporal or frontal lobe are most often implicated. These can resemble primary psychiatric illnesses, including psychoses, mood disorders, panic disorder, and dissociative disorders (Deonna, 1995; Tisher et al., 1993).
Interictal Behaviors - Less widely recognized are the long-standing personality (Swanson, Rao, Grafmen, Salazar, & Kraft, 1995) and behavioral changes that occur between seizures, which can lead to increased irritability and lowering of frustration threshold (Gerald, Spitz, Towbin, & Shantz, 1998).
Psychiatric diagnosis in a developmentally disabled individual can be complicated by both "shadowing" effects and communication and insight gaps (Giacino & Cicerone, 1998). Individuals with learning disabilities may experience subsequent head injury, further impairing their abilities (Donders & Strom, 1997). This can lead to a long history of inadequate psychiatric diagnosis improperly guiding medication decisions. In addition, little attention has been paid to the experience and ability of caregivers to help in the process of assessment. Hastings (1997) revealed that experienced care staff and inexperienced students differed in their views on likely causes of challenging behaviors. The experienced staff as a group rated social and emotional variables as likely causes of challenging behaviors, while the inexperienced group was more likely to attribute difficulties to more immediate causes.
Personal experience suggests that experienced non medical staff tend to view social and environmental factors as significantly involved in crisis behaviors, while inexperienced non medical staff expect a physician or psychiatrist to be able to "fix" a problem. This has profound implications for psychopharmacological interventions in crisis situations, because the prescribing physician may be unduly influenced by inaccurate information and the urgings of inexperienced staff. This highlights the need for longitudinal data collection and analysis in any assessment of dysfunctional behaviors.
For some individuals with developmental disabilities, the nature of the challenging behaviors may result in aggression, destruction or self injury. These behaviors are sometimes expressed to a level where safety for the individual and the community is a concern. Community teams are always striving to promote positive and therapeutic community life styles that address these issues in a proactive manner. Yet, despite these efforts teams can predict dangerous behaviors will still occur. Individuals with these issues may challenge teams to develop more intensive supports to the community program in order to assure safety. The approach, then, for these individuals is to offer "best practice" supported community lifestyles while simultaneously establishing an intensive crisis response for when dangerous behaviors occur.
When these programs are effective they assure the individuals grow emotionally, keep the community safe and reduce the risk of short or long stays in more restrictive settings.
Some example of intensive crisis response can include:
- Training care providers in crisis intervention strategies
- Developing a "safe space" in the home for the purposes of regaining emotional control
- Use of physical intervention
- Including the police in a coordinated crisis response.
These approaches are called "Restrictive Measures". The community support team will need to use these approaches carefully and thoughtfully in order to avoid human rights violations. Also when creating more intensive supports, teams are making decisions that may impact client rights. State of Wisconsin Community Integration Specialists should be included on the team to assist with these decisions.
Training activities have long been recognized as essential to promoting quality, retaining staff, providing consistency in the provision of services, communicating best or better practices, and inspiring staff to feel good about the work they do on a day-to-day basis.
Motivated and educated staff are more likely to respond better to emergency situations, make better care decisions and exhibit more confidence in the jobs they do. Staff training builds confidence and can result in a better relationship between the service provider and the consumer, as well as providing a potential pathway to a higher degree of professional responsibility.
A healthy, respectful relationship between direct care professionals and consumers has been shown to reduce critical incidents, decrease unnecessary power struggles, promote good role models and, in general, build a happier household for all.
Please see Waisman Center Training and Consultation for information on upcoming training opportunities.
Environmental adaptations and modifications come in all shapes and sizes and go beyond what one might think. People often think of ramps and other modifications to make a house more accessible when discussing this topic, but there are several other modifications that can be put in place that create a safer environment for people with aggressive tendencies. Soft furniture is sometimes a good way to prevent self-injuries, sometimes door alarms are required for those who attempt to leave their homes during times of instability when they are not safe. Reinforced windows are commonly used to prevent breakage and subsequent injury, many people who are loud during times of increased anxiety and agitation risk eviction or disturb others if rooms are not soundproofed. Even a piece of tape over a clock so an individual does not obsess over time can be an environmental adaptation.
One of the most important environmental choices to be made is whether the person will live alone or with others. Many times, funding constraints do not allow for individuals to live without a house mate but having a private room should always be an option unless the person specifically chooses to share personal space with a trusted friend. In instances where there is no option for private rooms, other modifications to the living arrangement may be necessary. Sometimes just a quiet space to regain control is helpful.
People who become violent may require a time-out room in their residence; many times these rooms are unfurnished or have soft furniture items in them to keep the person safe while she/he regains control. These rooms are not used for punishment; the person enters them voluntarily because they know they are feeling out of control and unsafe. Fencing is another modification that is sometimes added to residences, particularly for those who enjoy time outdoors but have no danger or safety awareness, or who might wander off. Fencing a yard must not take the place of staff supervision however; unknown dangers can exist in all outdoor areas and without supervision, people have been known in ingest inedible items in their yards, injure themselves on swing sets and hop over fences in attempts to explore their environments.
The impact the chosen living environment has on behavior cannot be underestimated. Many people who challenge us through their behavior have difficulty sharing personal space with anyone else and may manifest this through many means; behavioral outbursts and aggression to others are common as are competing for staff attention, intruding into others' personal space or taking items that belong to others. While modifications may risk violating residents' rights, in many cases, the person will voluntarily give up his/her rights as he/she develops insight into the destructive and dangerous nature of the behavior. Safety is one of the most important reasons for modifications and adaptations. Often an individual feels safer knowing that the doors can be locked, the stove may not turn on, and the windows are reinforced; sometimes knowing that these traditional targets "won't work anymore" actually decreases the urge for property destruction and ultimately makes the person feel safer; needless to say, staff are also feeling safer.
A final reason to implement adaptations and modifications is for the community. Individuals who can become aggressive draw attention to the home. Neighbors and the community often develop a negative impression of the individual or home based on biases, ignorance, assumptions, hearsay, and perceptions; other times, these impressions are created by the presence of police cars, loud noises, yelling or observations of conflict around the home. Minimizing these negative impressions to the degree possible is one way for adults with disabilities to be better accepted into stable neighborhoods. Soundproofing, maintaining the yard and home to the standards of the neighborhood, and teaching boundaries will all go a long way in facilitating acceptance and helping the home to blend into the existing community.
Any adaptation or modification to a person's residence must be in the best interests of the resident's heath and safety and must not infringe on the rights of the person nor of others in the home. Let thoughtful, person-centered thinking be your guide; include the entire team in the discussion including the persons who will be most affected by your decision. Staff convenience should never be part of these discussions.
Go HERE to view photos of environmental adaptations.
The role of the psychiatrist and other medical professionals within a person's team is critical, and ensuring objective information is shared with these professionals is one responsibility team members have when gathering to discuss "how someone is doing." Medical staff are typically trained to assess progress within one-to-one verbal communications with their patients. Working with a non-verbal client or an individual with poor or unreliable communication skills therefore requires the psychiatrist to seek objective information from that person's team in order to accurately understand dysfunctional behaviors, as well as any effects of interventions that have been tried. Successful outcomes often depend on the skill the medical professional brings to the team with respect to combining treatment models that may sometimes conflict.
Team members have the responsibility to make sure information shared with medical professionals is factual. Often times, teams may use daily log books to share progress, and though this type of information is rich with content and has great value, it is often difficult for busy professionals to look through and quickly interpret. Similarly, information presented in this way is not necessarily unbiased. Teams should strive to work towards collecting information on target behaviors/psychiatric symptoms that are well defined and related to diagnosis and interventions. Data must be collected that accurately represents how the person behaves. This information should be presented in such a way that medical professionals are able to easily read and evaluate progress in a short amount of time.
Presenting data in the form of a behavioral graph allows someone to make a quick assessment, and represents a simple way for team members to share "how someone is doing." Of course, including individuals who are capable of conveying their own impressions on how a particular treatment is affecting them is important, though team members need to be certain the person's statements are reliable in order to make sure medical professionals receive accurate information. Likewise, as medical professionals often prescribe medication to assist in treating behavioral concerns, it is critical that team members work with the psychiatrist or other medical professional to clearly understand the likely benefits of any medications that are prescribed, and in this way, the data that are collected can reflect those potential benefits. If the expected benefits are not observed within a reasonable amount of time, team members should work with the medical professional to decide what the next step might be, and consider discontinuing medications that are not helpful.
Potentially helpful tools and example graphs:
Data sheets (datasheet.pdf, sleep data.pdf)
How to use these data sheets
Graph template (sample graph.pdf, sample spreadsheet.pdf)
Graph creation instructions
Progressive Intervention Protocol
Crisis is often defined as "the experiencing of ... a situation as an intolerable difficulty ... that exceeds the person's current resources and coping mechanisms (1)." It " ... usually refers to a person's feelings of fear, shock, and distress about the disruption, not the disruption itself (2)".
Individuals with developmental disabilities often communicate feelings that overwhelm them through "challenging behaviors" which often lead to inappropriate and costly stays in more restrictive settings (psychiatric hospitals, jail, or mental health institutions). However, "crisis" in the context of developmental disabilities services, also refers to the caregiver's perception that an individual's needs and challenges exceed the caregiver's capacity to keep the individual safe.
In a medical (and more traditional mental health) model, psychiatric hospitalizations are one of the more common responses to crisis; the goal of a short term hospitalization is the stabilization of acute symptoms (through medication adjustments) in a safe and therapeutic environment. Safety refers to both the actual quality of the environment (supervision, locked doors, etc.) but also to the patient's perception/sense of feeling safe in that environment (respite effect).
Although hospitalization can be very helpful to many individuals, it can be problematic for people with developmental disabilities:
- hospital staff might have difficulties relating to individuals with DD and their unique communication strategies
- therapeutic resources cannot easily be adapted and individualized to accommodate the learning styles of individuals with DD
- individuals with DD might not be able to transfer acquired coping skills to their home environment
- the hospital routine can be disruptive for individuals who are accustomed to a rigid, very personalized routine
- individuals with DD are more at risk to be taken advantage of by other patients and are more likely to copy unsafe coping techniques from other patients
- hospitalizations can be expensive
- hospitalizations often require the individuals to give up some control (requires Dr's permission to leave).
A community-based Crisis Response system for individuals with DD strives to provide an alternative to hospitalizations. It should be:
- proactive in nature (no division between pro-active and reactive supports) and part of an ongoing outreach effort to train and prepare direct care providers for crisis intervention
- individualized and person-specific (the crisis team needs to have a thorough knowledge of the person they are serving; relationships are the key!)
- positive (anchored in the principles of Positive Behavior Support)
- consumer directed: the individual and/or his/her guardian participates in the team process and directs the development of his/her crisis plan
- easy to access at all times
- free of charge to the consumers and guardians
- work well with existing service providers.
It should offer the following service components:
- consultation on positive behavior supports and clients rights issues (restrictive measures)
- consultation on environmental adaptations & more intensive supports/interventions
- assistance in navigating emergency mental health services (emergency detentions) and coordinating interventions with the criminal justice system
- assistance with health care coordination
- access to community-based therapeutic resources and emergency psychiatry
- access to well trained additional support staff who can assist in the assessment process, provide situational counseling, provide respite and guidance to direct care staff and support the person where he/she lives/works, or plays
- short term respite in a safe, neutral environment that is modified to accommodate behavior challenges
- follow-up consultation to prevent future crises.
A functioning crisis response system will creatively and flexibly (it's more of an art than a science) piece together additional supports on a temporary basis. It should not be considered as a permanent placement option - especially in times of dwindling public funding, but can be a cost-effective alternative to an inappropriate and lengthy institutionalization. At best, it can help individuals and their support teams to buy time, get some breathing room and hopefully contribute some ideas and instill confidence how to tweak existing supports for the better.
Crisis interventions are highly individualized: One size does not fit all. Just as individuals are different, communities are different and a model that works in one urban setting might not work at all in a rural setting, or even another urban setting. Although the key elements of crisis response might be very similar, they might be organized in very different ways. Successful Crisis Response programs draw from the strength of existing providers and try to expand capacity starting with the resources available.