Many people with intellectual and developmental disabilities (I/DD) also have co-occurring physical or behavioral health conditions, which put them at greater risk for contracting COVID-19 and experiencing complications if they become infected. This is especially problematic when individuals in this population are also dually eligible for Medicare and Medicaid and rely on a fragmented network of supports and services to meet their needs. The COVID-19 pandemic has made providing quality care to this population even more difficult and created additional access barriers to needed supports.

Through support from Arnold Ventures, the Center for Health Care Strategies (CHCS) is producing a blog series that explores COVID-19’s impact on different sub-populations of dually eligible individuals. To understand the challenges that dually eligible individuals with I/DD are facing during the pandemic, CHCS spoke with Stephan Deutsch, MD, chief medical officer, and Lila Benayoun, senior vice president of operations at Partners Health Plan (PHP), an integrated Medicare-Medicaid Plan for adults with I/DD in New York State’s demonstration under the federal Financial Alignment Initiative called Fully Integrated Duals Advantage for Individuals with Intellectual and Developmental Disabilities.

Challenges for Individuals with I/DD amid COVID-19

Many people with I/DD have behavioral health needs or cognitive and communication differences that make navigating the health care system and advocating for themselves difficult. For example, when someone with I/DD is hospitalized, they frequently need a family member, direct support professional, or other caregiver to fill communication and cognitive gaps to ensure the care they get is appropriate, person-centered, and effective. This support is crucial because very often hospital staff are unfamiliar or inexperienced in caring for people with I/DD, and may lack the skills or training to manage the medical and behavioral health needs of some individuals.

Current restrictions to combat the spread of COVID-19 have made it difficult or impossible for support personnel or caregivers to accompany individuals with I/DD in the hospital. When caregivers are not there to help, people with I/DD are at increased risk of stress, loneliness, and behavioral challenges on top of the condition that caused them to be hospitalized. For example, a hospitalized individual with I/DD may not eat if they are used to certain mealtimes or with a specific person.

The Benefits of Integrated Programs for Dually Eligible Individuals with I/DD

Integrated care programs can provide robust, person-centered care management, which is key to addressing the comprehensive medical and social needs of people with I/DD and is critical to keeping members out of the hospital and in the community. PHP, for example, conducts clinical rounds with the whole care team — led by a care manager — for every hospitalized member and individuals in skilled nursing facilities, in which staff share updates, progress, and data. The process allows staff to regularly advocate for members, as well as assist with discharge planning and care transitions, which can often be more complex for people with I/DD. PHP also has a doctor of pharmacy (PharmD) on staff to help manage medication regimes. By having access to members’ medical records and histories for full medication therapy reviews, the PharmD can share information and insights with care managers, as well as direct support professionals or caregivers who support individuals in their homes. This expertise helps prevent harmful medication interactions, complications, and side effects that physicians may not always be aware of, which often lead to hospital admissions and readmissions.

Integrated programs also can build collaborative solutions to avoid unnecessary hospitalizations. PHP worked with the hospital emergency departments in its network to develop guidelines for when members should be admitted and when they can be safely cared for in their homes or group residences. This has helped to prevent associated complications, such as escalations related to behavioral health needs and challenges stemming from communication barriers.

Response to COVID-19

Since the start of the pandemic, PHP has used data analytics and a risk-stratification process to help prioritize outreach to its members. At the height of the pandemic, PHP had weekly contact via telephone or virtual visits for high-risk members with acute health and safety concerns, and monthly or biweekly contact for members considered to be at lower risk and more stable. PHP also seeks to meet member needs by emphasizing cultural competency. Through its hiring practices, PHP has created a diverse workforce, which is reflective of the people it serves. This means that staff are sensitive and responsive to members’ backgrounds and perspectives which can help break through barriers that stand in the way of building trust and understanding.

Early this year, PHP expanded a telemedicine pilot program first launched in 2018. The program has helped drop hospital admissions from 423 per thousand in 2017 to 322 per thousand in 2020 and prevented an estimated 40 to 50 unnecessary hospitalizations during COVID-19. Although PHP’s use of telemedicine was not spurred by COVID-19, the plan has come to rely on it to support its members throughout the pandemic.

To address issues around social isolation and provide opportunities for social connection, PHP again leveraged existing solutions. Its PAL Program, and newer PAL Social Program launched in January 2020, allows members to connect and socialize with each other, PHP staff, and the greater community through virtual activities that promote friendship, shared experiences, and mutual interests. Both PAL and PAL Social have been invaluable during the pandemic for maintaining social connections through a virtual environment. However, some individuals with I/DD have challenges using smartphones, computers, or the internet, especially if someone has speech or verbalization differences, as well as other issues around accessing these technologies.

The Way Forward

COVID-19 has exposed many inadequacies in our health care system. For individuals with I/DD, providers’ unfamiliarity in caring for this population can lead to avoidable hospitalizations, which may be especially dangerous during the pandemic. It can also lead to significant and potentially long-term ramifications, including regressions in an individual’s physical and behavioral health that can grow worse over time. The support of caregivers and peers is also crucial for people with I/DD. When COVID-19 cut-off this support, their physical and psychological well-being suffered. Programs like PHP highlight the benefits of an integrated approach to care that provides the comprehensive and coordinated health and social supports that individuals with I/DD and their caregivers need to ensure whole-person, dignified care.


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