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Psychiatric and Behavioral Problems in Individuals with Intellectual Disability This checklist is based on Treatment of Psychiatric and Behavioral Problems in Individuals with
Mental Retardation: An Update of the Expert Consensus Guidelines (2004) by M. C. Aman, M. L.
Crismon, A. Frances, B. H. King, and J. Rojahn, which summarized the recommendations of a panel of national experts. The checklist was developed for Service Coordinators, Program Managers, QMRP’s, and others who coordinate and supervise care for individuals with intellectual disability. It was adapted from the expert consensus guidelines, with permission of the publisher, by the DC Health Resources Partnership at Georgetown University–University Center for Excellence in Developmental Disabilities.
When to Use This Checklist
This checklist is intended to help you coordinate andsupervise the care of individuals with co-occurringintellectual disability and psychiatric/behavioral Key Principles in Diagnosis
problems. For mandatory requirements, consult the
Effective treatment is most likely when there is an Developmental Disability Administration’s guidelines.
accurate and specific diagnosisAs the level of ID becomes more severe, it is Individuals with co-occurring intellectual disability (ID) increasingly difficult to make psychiatric and psychiatric/behavioral diagnosis have:* diagnoses other than autistic disorder, but it Significantly subaverage intellectual functioning (IQ of 70-75 or lower) evident before age 18 years.** The two diagnostic manuals to be familiar with are the DSM-IV-TR (current Diagnostic Style Manual of the Limitations in adaptive skills and functioning in at American Psychiatric Association) and the DSM-ID least two areas (such as communication, self-care, (Diagnostic Style Manual for Intellectual Disability) by social skills, self-direction, health, and safety).
NADD and the American Psychiatric Association Significant psychiatric or behavioral problems.
Sometimes treatment is focused on improvement oftarget symptoms. Even when a specific diagnosis can Note that the diagnosis of ID requires that the be made with confidence, the clinician should also impairment in IQ precedes and is unrelated to the assess for behavioral symptoms that may be *Based on criteria from the DSM-IV-TR and the American Association on Intellectual and Developmental Disorders.
**Editor’s note: Many of these guidelines are also applicable to individuals with cognitive limitations acquired in adulthood (asin traumatic brain injury).
Assessment Continued
Identifying and Managing Stressors
Common Behavioral Problems
Eliminating stressors may sometimes be the primary targetof treatment or an important component of the overall treatment plan. Common stressors that may set off Physical aggression toward people or destruction behavioral or psychiatric symptoms include the following: Interpersonal loss or rejection
Being fired from a job or suspended from school Environmental
Overcrowding, excessive noise, disorganization Formal Assessment
Parenting and social support problems
Lack of support from family and/or other caregivers, The Functional Behavior Assessment should clarify the specific purpose that each behavior is serving for the Destabilizing visits, phone calls, or letters individual (escape from demands, communication, protest, need for sameness, self-soothing, comfort in repetitive behavior, etc). The assessment should include: Interviews with direct caregivers
Direct observation of behavior in the
Transitional phases
Functional assessment behavior rating scales
Ongoing assessment of treatment effects and side effects Developmental landmarks (e.g., onset of puberty) Illness or disability
Repeated behavior rating scale assessments Chronic medical or psychiatric illness (which is more common in ID than in the general population) Standard psychiatric diagnostic interview (more highly Sensory problems like hearing or vision lossDifficulty with walking Laboratory tests, standardized psychological tests, and indirect measures completed by other informants mayalso be useful Stigmatization
*Editor’s Note: Best practice for functional assessment includes,
Taunts, teasing, exclusion, being bullied or exploited whenever appropriate, analog observation conditions. Frustration
Due to inability to communicate needs and wishes KEY STRATEGIES IN
Due to lack of choices (about specific activities, diet, PSYCHOSOCIAL TREATMENT
work, etc.)Because tasks are too hardBecause the individual is aware of areas of deficits General Principles of Intervention
Enlist the cooperation of the individual and family Change the Environment
Rearrange physical and/or social conditions that seem to Ensure that there is continuity of care (e.g.,case coordination) Identify and manage stressors that exacerbate Structure the physical and psychosocial environment to psychiatric disorders or behavior problems Change the activity (e.g., restructure tasks so they are Facilitate timely access to care (e.g., information, Change work, social groupings, or routines Change the physical environment (e.g., noise, Select residential arrangements to suit functional level Enrich the environment through social or Ensure placement in the least restrictive Key Strategies in Psychosocial Treatment Continued
Teach the Individual
Reduce stimulation and activities during the evening Instruction to permit a functional communication Rule out other causes for insomnia (e.g., sleep apnea, system needs to be a priority. Alternative, augmentative,
alcohol, nicotine, decongestants, beta blockers, and visual strategies should be considered Dealing with Weight Problems
Instruction in coping (self-control) skills Individuals with ID are at increased risk for excessive Teach the Caregivers
weight gainIn addition, many of the medications that are used to Assure that the caregivers have the skills necessary to treat psychiatric and behavioral problems can affect foster the individual’s functional communication weight, for example, psychostimulants and Topamax (including visual communication strategies) (topiramate) are associated with weight loss, whereas Teach skills to manage behavioral and psychiatric some atypical antipsychotics such as Zyprexa and problems that may accompany developmental disabilities Risperdal are associated with weight gain Provide appropriately worded educational materials Clinicians should discuss the importance of avoiding (e.g., booklets about medication and consent procedures weight gain with families and caregivers. A number of strategies can help manage weight problems and may Refer to consumer advocacy and support groups make it possible for individuals to stay on medication Behavioral training for family, teachers, and staff that is helpful for behavioral issuesObtain baseline height and weight before beginning a Other Treatment Methods Include:
Applied Behavior Analysis works by changing
Structure meal times before medicine starts antecedents and consequences of target problem Provide the right foods (vegetables, high fiber) instead of behaviors, building appropriate functional skills, and providing systematic reward of desirable behavior Encourage “fun” exercise (e.g., working out on a Cognitive-Behavior Therapy in individuals with mild-to-
trampoline, walks in the park, bicycling, swimming) moderate ID (focusing on underlying thought processes; Monitor height and weight (including waist girth) regularly biased perceptions; and unrealistic expectations, If on an atypical antipsychotic, monitor glucose and lipid attitudes, and emotions) for major depressive disorder, posttraumatic stress disorder, obsessive-compulsive
disorder, and prominent anxiety symptoms
Classical behavior therapy (including gradual exposure to
whatever elicits the fear) in some instances of specific fears
Although medication is under the purview of treatingphysicians, it is important for care coordinators and others Dealing with Insomnia
Sleep problems are common in individuals with ID.
In general, before medication is prescribed, the
They can cause considerable difficulty in themselves and following should be assessed:
can exacerbate (or be exacerbated by) psychiatric or behavioral problems. The experts recommend a number of Psychosocial and environmental conditions Health status (including ruling out pain) Current medications (including over-the-counter) Provide education about good sleep hygiene History, previous interventions, and results Avoid environmental disruptionsRestrict napsRestrict substance usePromote exercise if appropriateRelax with bath and/or reading at bedtime General Principles of Medication Use Continued
Evaluating Side Effects
Monitor for side effects regularly and systematically (at Behavioral Symptoms as the
least once every 3 to 6 months and after any new Target of Treatment
medication is begun or the dose is increased). A The decision to use a psychotropic medication and standardized assessment instrument can be helpful in choice of medication are generally more straightforward in the presence of an identifiable psychiatric diagnosis If an antipsychotic is prescribed, assess for tardive If it is not possible to make a reliable specific diagnosis, dyskinesia (involuntary movements) at least every medication selection should be based on specific behavioral symptoms as the target of treatment If on an atypical antipsychotic, monitor for changes in However, even when a specific diagnosis can be made weight, and blood glucose and lipid levels with confidence, clinicians should also assess for If the individual is on more than one medication, behavioral symptoms that may be targets of treatment Strategies for Medication Management
The general recommendations presented here are based Avoid using two medications from the same therapeutic on the CMS Safety Precautions consensus statements and class at the same time (this is called intraclass the experts’ responses to questions on dosing strategies, polypharmacy, e.g., two SSRIs, like Prozac and Zoloft) use of blood levels, and indications for hospitalization In contrast, using two or more medications from Individuals with ID may be at higher risk for certain side different therapeutic classes at the same time (interclass polypharmacy) may be appropriate and needed in movement disorders induced by antipsychotic
certain situations (e.g., psychotic or bipolar depression, partial response to one drug, comorbid conditions) dystonias (in which sustained muscle contraction
causes twisting and repetitive movements or Other Medication Practices to Avoid
dyskinesias (with involuntary movement such as
Long-term use of benzodiazepine antianxiety agents such as Valium (diazepam) or shorter acting sedative neuroleptic malignant syndrome (a rare,life-threatening
reaction to medication that includes fever,muscle rigidity, Use of long-acting sedative hypnotics (tranquilizers such change in mental status and other medical findings) weight gain
Use of anticholinergics (a class of muscle relaxant) symptoms associated with psychostimulant treatment
when the individual does not have extrapyramidal symptoms (tremor, restlessness, involuntary movement, Individuals with ID, especially those with behavioral problems, are more likely to be receiving multiple Higher than usual doses of psychotropic medications medications,increasing the risk of adverse drug interactions (“psychoactive drugs” affecting the mind or mood orother mental processes) Recommended Dosing Strategies
Use of Dilantin (phenytoin), phenobarbital, Mysoline Keep medication regimen as simple as possible. Consider use of once-a-day dosing and extended-release formulations Long-term use of prn medication orders Start low and go slow—use lower initial doses and increase more slowly than in individuals without ID Use the same (or lower) maintenance and maximumdoses as in individuals without ID Use of Blood Levels to Monitor Medication
Periodically consider gradual dose reduction (at the Blood levels may be helpful in the following situations: same rate or more slowly than in individuals without ID) Serious side effects or nonresponse to usual doses Avoid frequent drug and dose changes unless there is a valid reason for the change (e.g., no response, adverse effects) Worsening behaviorTo check for possible variation in metabolism Evaluating Treatment Effects
Collect baseline data before beginning medication When an individual is taking a combination of Evaluate medication efficacy by tracking specific index medications, is at risk for seizures, or has difficulty behaviors using recognized behavioral measurement methods (e.g., frequency counts, rating scales)Evaluate the medication’s effect on functional status General Principles of Medication Use Continued
Review of the Medication Regimen
Review regimen regularly (at least every 3 months and Remember the person is first, the disability is second.
within 1 month of drug/dose change) to determine if Use words that are easy to understand.“People first” medication is still necessary and if lowest optimal Talk to the adult person, not to his or her assistant The prescribing doctor should see the individual Allow enough time for questions and concerns to be raised Provide a way for people to ask a question if one occurs Consult with caregivers and the multidisciplinary team to them after they leave your office or clinic Consider possibly reducing the number of psychotropic Involve individuals and families to the greatest extent medications, even if medication-free status is not possible possible in all aspects of decision making, asking for Use a continuous quality improvement model input about the severity and nature of problems and Incorporate a mechanism for flagging cases of Provide individuals and families with written materials (and/or refer to Web sites) that provide appropriate Risk of suicide
information about their illness and the medications Significant self-injury or harm to others
Acute psychotic symptoms
Provide follow-up and compliance directions in writingor alternative formats if needed Recommended Steps Before Changing the
Be prepared to consult with other members of the Medication Regimen
Ensure adequate duration of medication trial
Your interdisciplinary skills can be the key to the For antipsychotic such as Clozapine, Risperdal and
Emphasize person-centered and family-centered For mood stabilizer such as Lamictal, Seroquel, 1-3
strategies that reflect positive behavior support Provide services and programs within the most For SSRI such as Prozac and Zoloft, 6-8 weeks
normative settings and natural environments possible Use the longer durations if partial response
Identify and refer to comprehensive supportive services (e.g., speech or occupational therapy, assistance with Ensure adequate blood levels of medications housing or finances, supported employment) Tailor interventions to fit typical real-life routines and settings (e.g., at home, school, in the community) Elicit information from the person and his or her family and/or other caregivers concerning outcomes that are Manage environmental problems and stressors Optimize other interventions (e.g., adequate In evaluating for aggressive or disruptive behavior problems, clinicians, family and caregivers should be Get more information from other informants aware that some genetic syndromes have known Order additional laboratory studies (e.g., thyroid behavior problems (behavioral phenotypes), e.g., Prader- Willi syndrome, Williams syndrome, Fragile X syndrome Refer individuals and families to appropriate supportgroups where they can discuss their experiences and concerns with others who might have been insimilar situations Key Resource for this Checklist: Treatment of Psychiatric and Behavioral Problems in Individuals with Mental Retardation: An Update of
the Expert Consensus Guidelines Update (2004)
by Michael C. Aman, PhD, M. Lynn Crismon, PharmD, FCCP, Allen Frances, MD, Bryan H.
King, MD, and Johannes Rojahn, PhD. Adapted with permission.
For Additional Information: Consult the DC Health Resources Partnership website: or call 202 687-8544. For
information on regulations and required monitoring, please consult the Developmental Disabilities Administration.
December 2009This project is funded by the Government of the District of Columbia, Department onDisability Services, Solicitation POJA-2009-R-RP05


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Title Medication Adherence: Commonly Used DefinitionsAuthor Xiangyang Ye, Pharmacotherapy Outcomes Research Center, Univertiy of UtahMaintainer Xiangyang Ye <>Description Medication Adherence: Commonly Used Definitionsadherence-package . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . cmos . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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