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Toolkit: Intellectual and Developmental Disability Psychiatry

People with developmental disabilities who also have a dual diagnosis of mental illness often depend on their families and their direct support professionals (DSP) for assistance with their psychiatric appointments as well as with monitoring and treatments.

Evaluation & Monitoring

When a person begins psychiatric care, there are some things that doctors and other clinicians will do to ensure people get the best treatment they may need.

  • Establish a Baseline
    • Clinicians will evaluate the person’s current level of functioning as well as work to understand what their best level of functioning looks like. This gives clinicians a starting point to understand where a person currently is, as well as where they could be regarding their psychiatric health. Clear and consistent documentation can be very beneficial in establishing an accurate baseline.
  • Evidence-Based Practice
    • Once clinicians understand a person’s status, they should use evidence-based treatment for people with intellectual and developmental disabilities. Clinicians should use treatment plans that have been studied and proven to best help people with IDD. However, evidence-based information may not be available for every IDD diagnosis. If this is the case, clinicians should use guidelines for people without IDD in their treatment plan.
  • Rating Scales
    • When possible, clinicians might use a rating scale to understand a person’s status and how they may be improving with treatment. For example, he/she might ask, “On a scale of 1 to 10, with 10 being ‘Great,’ how are you feeling today?” If a person is unable to share this themselves, it could be helpful for either a family member or DSP to use the scale as well. One important thing that family members and DSPs can do is keep a log to document how the person is feeling.
  • Labs and Monitoring
    • A clinician may request routine labs, as well as use a clinician-rated scale (Abnormal Involuntary Movement Scale) to assess the presence or severity of involuntary movements in patients taking particular medications. It is important to monitor medication levels and other health issues such as changes in lipid and blood sugar levels, thyroid dysfunction, and blood disorders.
  • Informed Consent
    • The clinician should clearly explain the expected benefits of medications, possible side effects, and other treatment alternatives. People must understand why they are taking any medications, what other things might happen when taking any medication, and what other options might be available for helping them. If the person, their family, or DSP has any questions, it is important to remember that it is within their right to ask.
  • Timing of Medications
    • When a clinician has developed a plan for medications, it is important to follow that plan as closely as possible. Be sure to take medications at the same time every day, do not miss any doses, and take them only as long as prescribed.
  • Monitor for Improvement
    • The clinician will monitor the person to assess for improvement. Though appointments are a piece of this monitoring for improvement, this can also be done through documentation and logs kept by family members or DSPs. If there is no improvement, they might advise the person to slowly reduce the medication and eventually stop taking it. It is important to never stop taking a medication without a clinician giving you instructions on how to do it.
  • Monitor for Side Effects
    • Side effects are secondary, often undesirable effects that are caused by medications and treatments. Some of the most common side effects are constipation, tremors, drooling, weight gain, and having an irregular heartbeat.
  • Supportive Interventions
    • Often, clinicians will prescribe medications with other supportive interventions. These might include sensory assessments, occupational therapy, physical therapy, speech therapy, behavioral supports, psychotherapy, weighted vests, nutrition consults, music therapy, structured activities, supportive staff, walking, or other supports. These supports, with medication, often help people get the most improvement.
  • Sleep
    • It is also important that people get quality sleep and have good sleep hygiene. A clinician might suggest an assessment for sleep apnea to be sure a person is sleeping well. Adequate good-quality sleep is instrumental in recovery.

Treatments

To help a person, clinicians might prescribe a medication, suggest the inclusion of other supports, or both. It is important to know that it may take some time for treatments to work, which is why people must follow the instructions they were given. Give the treatment plan some time to work. If the clinician determines something is not working, they will develop a new treatment plan with a new medication and/or other supports.

  • Aggression
    • It is important to know that all behavior is a form of communication.  The clinician, along with the person’s team, should first try to determine the possible environmental and medical causes of any behavior change. If those are not helpful, a medication might be prescribed to decrease aggression.  
  • Anxiety and Depression
    • Clinicians might prescribe medications, such as SSRIs, in combination with talk therapy – a treatment based on the idea that talking about the things that are troubling people can help them clarify their troubles, put them in perspective, and develop coping skills.
  • Bipolar Disorder
    • Clinicians might prescribe antipsychotic and/or antimanic medications for the treatment of mania. Monitoring of medication levels is often required for these medications. Good sleep habits are very important for supporting the treatment of bipolar disorder.
  • Psychotic Disorders
    • Antipsychotic medications are the first-line treatment for schizophrenia, schizoaffective disorder, and other psychotic disorders. These may be combined with environmental supports, such as family members and DSPs, that are helpful with symptom management in consultation with their doctor.
  • Attention Deficit Hyperactivity Disorder (ADHD)
    • Some medications that may be prescribed are stimulants, which may increase alertness, attention, and energy.
  • Personality Disorders
    • Multiple members of a team that work together and provide education are important in providing safe support for someone with a personality disorder. Talking with a psychiatrist, psychologist, or other mental health providers can also be helpful in treatment.

There may be a time when a clinician decides to slowly decrease and eventually stop the medication. This must be done carefully and slowly. Always be sure the instructions to do so are followed carefully.

Use of behavioral support, counseling and talk therapy, education for families and DSPs, supports and services administrators, vocational and habilitation specialists, and other supports are all instrumental in recovery.

 

References

Gentile JP, Cowan AE, and Dixon DW, Editors. Guide to Intellectual Disabilities: A Practical Handbook. Springer Publishing, 2019.

Stahl, Stephen M., and Stephen M. Stahl. Stahl's essential psychopharmacology: neuroscientific basis and practical applications. Cambridge University Press, 2013.

Fletcher, R. J., Barnhill J., Cooper, S.A. (2016) DM-ID-2: Diagnostic Manual-Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. National Assn for the Dually Diagnosed Press.

Stern, Theodore A., et al. Massachusetts General Hospital Psychopharmacology and Neurotherapeutics E-Book. Elsevier Health Sciences, 2015.

Jenkins, James A., and Nicholas Kontos. "The Maudsley Prescribing Guidelines in Psychiatry." The Journal of Clinical Psychiatry 77.4 (2016): 469-469.

Puzantian, Talia and Carlat, Daniel. The Carlat Psychiatry Report Medication Fact Book for Psychiatric Practice: 5th Edition. Carlat Publishing, 2020.