Intellectual Disability Treatment & Management

Updated: Apr 19, 2016
  • Author: Ari S Zeldin, MD, FAAP, FAAN; Chief Editor: Amy Kao, MD  more...
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Treatment

Medical Care

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  • Early identification of children with developmental delays is necessary to begin receiving early intervention services for children from birth to 3 years of age and early childhood education services for children aged 3-5 years, which are known to improve outcomes.
  • The mainstay of treatment of MR/ID is developing a comprehensive management plan for the condition. The complex habilitation plan for the individual requires input from care providers from multiple disciplines, including special educators, language therapists, behavioral therapists, occupational therapists, and community services that provide social support and respite care for families affected by MR/ID.
  • Preventive care: Unfortunately, routine preventive care for children and adults with MR/ID is lacking. Adaptive equipment (eg, for nonambulatory patients) and extra time (eg, double time slots) may be required to accommodate such patients. In addition, family members or other support persons may be helpful. Written plans (such as the Massachusetts Department of Developmental Services Annual Health Screening Recommendations and Health Record) are helpful for interdisciplinary team communication.
  • Physical activity and obesity are major contributors to disease in MR/ID. Very few programs exist that target healthy lifestyles (nutrition/diet, exercise, self-care, stress reduction) in those with MR/ID. Annual counseling and referral on these issues to community agencies and programs is recommended. [32] Medications (eg, antipsychotics) should be titrated to reduce the risk of obesity and metabolic issues.
  • Pain
    • Manifestations of pain in people with severe to profound MR/ID include crying, screaming, grimacing, protective postures (eg, arching, fetal position), rocking, and aggression. Parent/caregiver input is key to interpretation of these behaviors, though validated tools have been used as adjuncts (such as the Pediatric Pain Profile).
    • Common causes of acute pain include dental caries/abscesses, GERD, constipation, UTI, spasticity (when MR/ID is associated with cerebral palsy), pressure sores, and fractures.
    • In addition, neuropathic pain due to dysautonomia or motor spasms may create chronic disturbances. Treatment should be prompt and include NSAIDs or acetaminophen for mild pain, tramadol or equivalent for moderate pain, and opioids for severe pain as indicated, and management of sources of pain. Some suggest use of gabapentin for neuropathic pain if no sources are identified and there is a history of surgery, symptoms suggesting visceral hyperalgesia (eg, associated with feedings or bowel movements), or symptoms of autonomic dysfunction and spasticity.
  • Written, verbal and pictoral forms of communication as well as gestures and demonstrations are helpful for those with MR/ID to ensure mutual understanding and improve treatment adherence.
  • Sedation/anesthesia: Patients with MR/ID requiring anesthesia may have different reactions than the general population, such as paradoxical reactions to benzodiazepines, and care should be taken to use the lowest dose and titrate slowly.
  • Sexuality/abuse: A significantly higher proportion of children and adults with MR/ID have experienced some form of abuse, with some estimates of up to 70%, which contributes to mental health issues. This should be addressed at each medical visit and especially in the setting of changes in behaviors, such as increased aggression.
  • No treatments are available specifically for cognitive deficiency. Although the pharmacologic enhancement of cognition (eg, use of donepezil in patients with Down syndrome [33] ) is an area of interest, research on such nootropic (ie, knowledge-enhancing) compounds is limited. Such drugs have not become part of the routine or even experimental clinical management of this population.

Other concerns

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  • Individuals in the United States older than 18 years are no longer under the guardianship of their biological parents. No exceptions are made for children with MR/ID. Most of these individuals, particularly those in the range of mild MR, are capable of making appropriate legal and medical decisions when adequately and appropriately informed of the decision outcomes.
  • Physicians have the duty to ascertain whether patients with MR/ID have the capacity to consent for medical treatments. This may be challenging and outside information and supports (eg, family, caregivers, social workers) may be required to confirm the patients' understanding of the risks, benefits and alternatives to the procedure.
  • Some individuals may not be capable of comprehending the implications of the medical or legal matter at hand. In such cases, the decision is best made by a member of the biological family. The family member may obtain guardianship status for power of attorney over these matters. If a family member is unavailable to serve as guardian, then a guardian ad litum can be assigned by the court for assistance in such legal and medical matters. If a patient with MR/ID does not have the capacity to consent, then the patient's assent should be sought if possible.
  • Subsequent to the long history of forced sterilization of girls/women with MR/ID, varied federal, state, and local laws regulate sterilization of individuals with MR/ID. The American College of Obstetrician/Gynecologists provides guidance on informed consent for sterilization procedures in patients with ID/MR. [34]
  • Complex decisions, particularly those involving end of life, are perhaps best handled with the assistance of the ethics committee of the involved medical institution.
  • Failure to identify a genetic cause of MR/ID with risks to other family members or risks to the patient for future medical complications are potential medical/legal pitfalls.
  • Perhaps 1 in 8 convicts on death row in the United States has MR/ID. Many persons cannot fully comprehend the Miranda Rights and other critical concepts necessary to maneuver through the criminal justice system.
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Consultations

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  • Developmental pediatrician or psychologist
  • Geneticist and counselor
  • Psychiatrist
  • Dentist
  • Podiatrist
  • Special education/educational therapist
  • Occupational, speech and/or physical therapist
  • Behaviorist
  • Pharmacist
  • Durable medical equipment providers
  • Social services agencies/social workers
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Diet

Nutritional supplements are of no proven benefit.

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Activity

Because obesity is more prevalent in those with MR/ID, regular physical activity should be included in the management plan [35] . Adaptive exercise programs for those with concomitant physical disabilities should be recommended as needed. [32]

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