Psychiatric and Behavioral Problems inIndividuals 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 ASSESSMENT
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 GENERAL PRINCIPLES OF MEDICATION USE COMMON PROBLEMS
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 Polypharmacy
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 KEY POINTS TO KEEP IN MIND 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: www.dchrp.info 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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