Pharmacy Care for the I/DD Population

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As with the general population, people with intellectual and/or developmental disabilities (I/DD) are living longer and by default, are being prescribed more pharmaceutical products, most in a concurrent, polypharmacy approach. Caring for the medical needs of this population is of the utmost importance to safeguard quality of life and to advocate for those who in many instances, cannot advocate for themselves.

Highly Focused Pharmaceutical Care

Having a very focused pharmacy program for the I/DD population, where the same pharmacist is able to gain a deep understanding of a patient’s needs and care cannot be overstated. Ideally, the pharmacy and/or pharmacist that treats an individual with I/DD would be “in house”, closely aligned with day habilitation services, community-based living services, supported living services, and independent living services, and having expertise in treating the I/DD population. If this is not the case, however, having a “go-to” pharmacy that is hyper-aware of I/DD needs, specific patient conditions and required care is a close second to the ideal scenario.

An in-house pharmacy helps to cultivate more independence for individuals, guiding self-administration of medicines. It is important that individuals are educated on their medications whenever possible, including not only what they take but also the rationale for taking each medication. Focusing on adherence and compliance is important as dosing is critical to health outcomes. Packaging, too, can make a world of difference in the experience of individuals with I/DD, making ease of use an important consideration.

Open Lines of Communication

The broader health system is arguably not always prepared to work with patients who have intellectual or developmental disabilities. Findings from a recent study published in the American Journal on Intellectual and Developmental Disabilities in January 2020 compared hospitalization rates for people with and without intellectual and developmental disabilities. The findings revealed that compared to the general population, adults with I/DD experienced a disproportionate number of hospitalizations associated with adverse medication events[1]. Communications are implicated as the most likely culprit for these statistics, as patient or caregiver may not be on the same page as prescribers. The health literacy of patients or caregivers cannot be assumed by clinicians or pharmacists.

Since communications between patient, caregiver, and clinicians may often be compromised, more closely integrating pharmaceutical care into a patient’s living or working environment can positively impact health outcomes. An in-house pharmacy makes one-on-one consulting, between pharmacist and patient (or caregiver) easy and this relationship can be very empowering to patients and caregivers alike. An in-house pharmacy makes support more accessible and timelier, and efficient dispensing or shipment of medications more likely. The end goal of pharmaceutical care for the I/DD population should be happy, highly functioning, better-informed patients, and an in-house pharmacy or more dedicated pharmacy support can go a long way in enabling this end goal.

Close Patient Monitoring and Adaptation

Given the nature of the medications used to treat the I/DD population, it is critical to have open communication lines between pharmacies, individuals, and caregivers. Patient monitoring of the efficacy of medications must involve an effort from all involved parties including individuals, caregivers, pharmacists and physicians. Solid relationships between pharmacists and community physicians and nurses who care for I/DD patients can only enhance communications and ultimately health outcomes.

For people with I/DD, psychotropic medications are commonly used, including antipsychotic medicines, sedatives and hypnotics. The nature of these medications requires close dose monitoring and frequent patient assessments, as non-compliance can lead to significant adverse events. Innovative, customized packaging solutions can further ensure safety and ease of use.

As with the general population, as individuals with intellectual and developmental disabilities age, typically their pharmacological needs change, most often expanding and intensifying. Allergies may become more acute and adverse interactions between medications may become more conspicuous and detrimental. This segment of the population requires more frequent monitoring and subsequent modification of medications.

Aging adults with I/DD, although they are living longer, commensurate with the longer life spans of the general population, still suffer from premature death and inferior health outcomes. Older adults with I/DD suffer disproportionately from a later onset of epilepsy and other mental health conditions[2]. Medications should serve to extend quality life spans of this population.

Health care providers may rely on pharmacists even more for answers or opinions when addressing the often more complex needs of the I/DD population, encouraging a closer-knit relationship between patient/caregiver, pharmacist, and physician. Autism is a prime example, where the right medication and the right dose is critical and physicians and pharmacists need to work closely to monitor patients and prevent overmedication.

Pharmaceutical vs Therapeutic Care

There is a growing movement spanning the globe, whose advocates discourage the use of some medicines or combination of medicines and promote the use of therapeutic interventions first and foremost. The movement stems from a concern about the overuse and potential abuse of certain medications, and the off-label use of medications for challenging behaviors. At the forefront of this concern is the use of antipsychotics.

Antipsychotic medicines are most often prescribed for people with I/DD and often successfully manage psychopathology, however there is less evidence supporting the role of antipsychotics in addressing challenging behaviors and growing evidence of the risk of harm[3] to individuals for whom antipsychotics may not present an appropriate first line of defense. In 2015, the National Institute for Health issued guidelines about appropriate responses to challenging behaviors in adults with intellectual or developmental disabilities. These guidelines stipulated that antipsychotic medication should only be considered when all other courses of action, including psychological therapeutic intervention, are not successful in managing challenging behaviors within an agreed-upon timeframe and/or the risk to the individual or other people is very severe[4].

Realistically, a balance between pharmaceutical and therapeutic care is the best approach for many individuals, and a pure pharmaceutical approach will almost never be the best approach.

Future of Pharmaceutical Care for the I/DD Population

Pharmacy care is evolving such that pharmacists are becoming more culturally sensitive to the needs of the different populations they serve, extending beyond race and ethnicity to individuals with I/DD.

Patient and especially caregiver education is likely to take on heightened focus for pharmacists as risks must be mitigated, and caregivers are key in minimizing those risks.

More integrated pharmacy models are on the horizon, where pharmacy care for the people with I/DD will be much more accessible, driven by pharmacists who are expertly attuned to this population.

CDS Life Transitions recently embraced an opportunity to innovate in the pharmaceutical space, launching an initial rollout of CDS Rx pharmaceutical services. CDS Rx is an integrated pharmacy model, designed to deliver more expert, consistent, and personalized pharmaceutical care to the I/DD community who utilize the agency’s diverse services. Such a model will allow for greater patient oversight and will foster stronger patient, caregiver and pharmacy relationships, ultimately delivering greater quality of life for people with intellectual and developmental disabilities.


[1] Pharmacy Today, Beyond limits: Caring for patients with disabilities; Innovations/Volume 26, Issue 4, pages 24-28, April 1, 2020; Loren Bonner & Aina Abell

[2] Therapeutic Advances in Drug Safety, 2018 September; 9 (9): 535-557; “Medication use and potentially inappropriate prescribing in older adults with ID: a neglected area of research”; Maire O’Dwyer, Phillip McCallion, Mary McCarron and Martin Henman.

[3] Therapeutic Advances in Drug Safety, 2018 September; 9 (9): 535-557; “Medication use and potentially inappropriate prescribing in older adults with ID: a neglected area of research”; Maire O’Dwyer, Phillip McCallion, Mary McCarron and Martin Henman.

[4] Therapeutic Advances in Drug Safety, 2018 September; 9 (9): 535-557; “Medication use and potentially inappropriate prescribing in older adults with ID: a neglected area of research”; Maire O’Dwyer, Phillip McCallion, Mary McCarron and Martin Henman.


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