Protecting the Health of Individuals with IDD

The COVID-19 pandemic drastically changed the lives of many Americans living with intellectual and developmental disabilities (I/DD). Before the pandemic, many individuals with I/DD were living in their homes and communities thanks to a network of services and supports. When safer-at-home orders went into place, this network crumbled. Direct support professionals (DSPs) began limiting their contact, and shortages in personal protective equipment (PPE) became common. As a result, many individuals with I/DD were left without the resources supporting their health care, housing, education, employment and social connections.

Since the pandemic began, UnitedHealthcare Community & State has been working closely with the National Association of Councils on Developmental Disabilities (NACDD), which supports the 56 Councils on Developmental Disabilities (DD Councils) across the United States. Through NACDD, the DD Councils have elevated the specific issues and concerns individuals with I/DD have faced during the pandemic. This has helped shape how we have responded to meet the unique health and social needs of our members with I/DD.

Though we are still in the midst of the pandemic, there are already lessons to be learned when caring for individuals with I/DD. This is an opportunity to consider which flexibilities and new ways of providing care should be considered as long-term approaches to supporting individuals with I/DD.

Finding new ways to serve individuals with I/DD

At the start of the pandemic, plain-language communications about COVID-19 were urgently needed. Many DD Councils spent time creating messaging in multiple languages, which was incredibly helpful and used by state agencies, providers and health plans when communicating with those we collectively serve and support. In one example, a New York DD Council partnered to adopt plain language communications and translation standards for COVID-19-related material for their I/DD population.

Many DD Councils spent time creating messaging in multiple languages, which was incredibly helpful and used by state agencies, providers and health plans when communicating with those we collectively serve and support.

Every DD Council was quick to realize that many individuals with I/DD didn’t have the technology they needed to access the internet for telehealth services and to address concerns about social isolation. The Maine DD Council solved this by distributing tablets to individuals with I/DD, while Kansas provided smartphones with prepaid service. Both of these options improved recipients’ abilities to access needed health care services and connect with their family and friends.

California and Massachusetts identified a high need for PPE. These states partnered with their local communities to get PPE to individuals with I/DD and their DSPs. These efforts extended to urban, rural and tribal communities.

Medicaid provides continued access to services

As the world shifted to virtual services, efforts were made by state agencies, health plans like UnitedHealthcare, and the DD Councils in every state to help individuals with I/DD continue to receive necessary Home and Community-Based Services (HCBS). In many states, this included covering telehealth visits and technology costs (e.g., internet access), providing hazard pay for DSPs and paying family members who began providing covered DSP services.

The pandemic showed how quickly individuals with I/DD can be at risk for losing access to needed health care services and social supports, which ensure that these individuals can continue to live, work and thrive at home and in their communities.

Rapidly changing options for delivering needed health care services required states to exercise their ability to use Medicaid waivers. While Appendix K waivers normally address short-term emergencies, like tornados, the pandemic showed how these short-term changes work over an extended period of time. Following the pandemic, it wouldn’t be surprising if we were to see CMS and state Medicaid agencies make some elements of these waivers more permanent as a way of improving access to care.

Working to improve care for individuals with I/DD

The pandemic showed how quickly individuals with I/DD can be at risk for losing access to needed health care services and social supports, which ensure that these individuals can continue to live, work and thrive at home and in their communities. Through the lessons learned to date, we have identified changes we need to make permanent to protect the health of this population. Our continued work with NACDD and our state partners will help us better serve our members with I/DD both during and after the pandemic. 

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