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Opportunity Awaits: Adults with Developmental Disabilities Living in the Community
By Steven Erickson, Pharm.D., associate professor of clinical pharmacy,
University of Michigan
A 61-year-old female who has a history of intellectual disability has been living in a group home for more than 10 years. While conducting an in-home comprehensive medication review, a pharmacist reviewed a paper copy of original prescriptions, the home medication administration record (MAR) and the actual medications and labels found in the home.
One medication presented a potential problem. During review, the pharmacist noticed the patient was taking valproic acid liquid. It was noted she had been taking 500 mg valproic acid delayed release tablets every morning and 1,000 mg tablets every evening. The patient had recently developed problems swallowing the tablets, so the prescriber issued a prescription for the liquid concentration preparation of 250 mg/5 mL.
Upon inspection of the MAR and the prescription copy in the MAR, a discrepancy was noted. The prescriber wrote for the patient to take 10 mL (500 mg) in the morning but 40 mL in the evening (2,000 mg), which the resident took for several months. She recently fell at home, which resulted in a brief hospitalization. The support person at the home said the resident had been unsteady when walking before and after the hospitalization. The pharmacist noted the discrepancy and called the prescriber as well as the dispensing pharmacy to inquire about the actual dose the patient should have been taking. The prescriber was unaware of the error in dosing and immediately changed the bedtime dose to 20 mL (1,000 mg).
People with intellectual or developmental disabilities (IDD) – like Down syndrome, autism spectrum disorders, epilepsy or cerebral palsy, for example – tend to have a higher prevalence of health conditions such as heart disease, diabetes, chronic constipation, urinary incontinence, obesity, seizure disorders, osteoporosis and mental illness. Some medical conditions are more commonly related to the reason for intellectual or developmental disabilities, such as hypothyroidism and dementia for people with Down syndrome.1 Because of higher burden of illness, people with IDD are subject to polypharmacy and resultant medication-related problems.
For example, hospitalizations for adults who have IDD are more likely to be associated with a medication-related problem compared to the general population.2 Multimorbidity, polypharmacy, complex medication regimens and greater prevalence of diseases that require medication therapy are risk factors for medication-related problems that are more common in this population.3 People with IDD often rely on a support network consisting of family, friends and direct support staff to assist them in managing their medications, all of which have varying levels of knowledge, training and experience with medication management. Inappropriate prescribing is also a problem for people who have IDD.
Psychotropic medication, as an example, is an important intervention for mental illness and some challenging behaviors, but research has demonstrated concern on the over-reliance on medication versus more holistic approaches of examining the person’s living environment and level of community participation, as well as assessing physical-health related reasons for behavior or mood changes.4
In other instances, people with IDD and chronic conditions may not be receiving or taking guideline-directed therapy. For example, a study using pharmacy and medical claims data showed that people with IDD and either heart failure or cardiovascular heart disease were less likely to receive guideline-directed medications compared to persons without IDD but with either cardiovascular diagnosis. Caregivers also have an important input into the safe and effective use of medication by people with IDD. One study found that a family caregiver’s beliefs and attitudes about concern and the necessity of medications were directly associated with adherence to asthma controller medication taken by people with IDD and asthma.5
Not only is having an adequately trained caregiver important, but it also takes a team to ensure the safe and effective use of medications by older people and those with disabilities living in the community. The pharmacy profession has experience in long-term care. At least once per month, as mandated by CMS, a licensed pharmacist must perform a drug regimen review (DRR) for each resident. The pharmacist must report any irregularities to the attending physician or director of nursing. Consultant pharmacists provide other vital services, such as developing policies and procedures for medication administration and disposal and performing in-service training activities for facility staff related to medication administration and other aspects of medication therapy.
Similar to the long-term care setting, persons with IDD living in the community setting, such as group homes, often receive medications and pharmacy services from contracted pharmacies. The medication management system implemented by the homes and pharmacies looks similar to that of long-term care, with pharmacies supplying medication in a 30-day supply bundled in various bulk dispensing packages, patient-specific medication administration records, medication administration equipment such as oral syringes, and more. Pharmacists are available to answer questions and even conduct training for staff about the medication management system.
One missing service is the consistent presence of a consultant pharmacist in the home. Rarely does the pharmacy conduct comprehensive medication reviews in the home. Conducting in-home comprehensive medication reviews for adults with IDD is feasible and identifies medication-related problems that may otherwise go unnoticed.
For example, a recent study where a pharmacist conducted an in-home CMR for 15 persons with IDD who took five or more medications identified 36 medication-related problems. The most common issues were a medication that was being taken with no indication for its use (seven occurrences) and identification of an untreated medical problem (seven). Other problems included wrong dose (five); patient or caregiver indicated the medication was not working (four); wrong dosage form was being used or given (three); duplication of therapy (two); pharmacy error (two); extended-release medications were being crushed before administration (two); and wrong administration time, drug ordered but not given, drug-disease potential interaction and poor drug administration technique (one for each). The interventions included sending information letters to the group home manager containing information to be discussed with the patient’s physician or telephone calls made directly to the prescriber or pharmacy.
The interventions made to prescribers included three calls to physicians to discuss five medication-related problems and three calls for pharmacy-related medication-related problems, all of which were accepted.6
This sounds great, but who has the time to do this and what reimbursement is there for conducting these interventions? Adults who have IDD, whether living with family members or in a supported living setting such as a group home or adult foster care, primarily have Medicaid or are dually eligible for Medicare and Medicaid. Starting in 2017 in Michigan, MTM activity is reimbursed through Medicaid when provided by qualified, licensed pharmacists to recipients taking a prescription drug to treat or prevent one or more chronic conditions as identified in the list of chronic conditions for medication therapy management eligibility. Pharmacies that provided contracted pharmacy services, community pharmacies serving individual patients who have IDD or consultant pharmacists contracting with pharmacies, all may be able to provide MTM to people who have IDD living in the community.
A recent survey of 10 pharmacies providing medications and services to residents of group homes found that most attempted to complete MTM using platforms such as Outcomes to identify Medicare Part D recipients in their patient panel at the pharmacy. Most mentioned that this was not done on a consistent basis, but rather when extra help was available, primarily with pharmacy interns or students who were working. Barriers to completing MTM included lack of time, sub-standard reimbursement for the amount of work, conducting over the telephone – which was not optimal for most patients with IDD – and lack of caregiver interest or understanding of MTM process.
In-home medication reviews may be beneficial in that the pharmacist can review the environment and social context in which the patient manages their medications. It also allows the pharmacist to talk with caregivers who may be assisting in managing the patient’s medications. In-home assessment with a person, such as the patient or support staff, who is engaged in the medication management process, is valuable for identifying in-home problems such as storage, administration, stockpiling, and documentation errors. The question is whether the process – using a pharmacist traveling to and from patients’ homes – is financially sustainable. With the technology available today, real-time in-home reviews can be conducted with the pharmacist remotely. Alternatively, a pharmacy technician may be able to travel to the home, facilitating a remote review and examining in-home health records.
It’s time for the profession to get serious about the medication-related issues that people with IDD face. Advocacy for adequate reimbursement and funded mandates to increase pharmacist oversight is certainly warranted.
References
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Liao P, Vajdic C, Trollor J, Reppermund S (2021) Prevalence and incidence of physical health conditions in people with intellectual disability – a systematic review. PLoS ONE 16(8): e0256294. https://doi.org/10.1371/journal.pone.0256294.
- Erickson SR, Kamdar, N, Wu, CH. Adverse medication events related to hospitalization in the U.S.: A comparison between adults with intellectual/developmental disabilities and those without. Am J Intellect Dev Disabil 2020;125:37-48. doi:10.1352/1944-7558-125.1.37
- Erickson SR, Nicaj D, Barron S. Complexity of medication regimens of people with intellectual/developmental disabilities. Journal of Intellectual & Developmental Disability. 2017. doi:org/10.3109/13668250.2017.1350836
- O’Dwyer M, McCallion P, McCarron M, Henman M. Medication use and potentially inappropriate prescribing in older adults with intellectual disabilities: a neglected area of research. Therapeutic Advances in Drug Safety. 2018;9(9):535-557. doi:10.1177/2042098618782785.
- Erickson SR, Juncaj S, Buckley C. Family caregivers of people who have intellectual/ developmental disabilities and asthma: Caregiver knowledge of asthma self-management concepts – A pilot study. British Journal of Learning Disabilities. 2018;46:172-181.
- Erickson SR. In-home comprehensive medication reviews for adults with intellectual or developmental disability: A pilot study. Journal of the American Pharmacists Association. 2020;60:e279-e291. doi:10.1016/j.japh.2020.03.019.
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