Research quantifying the impact of the coronavirus pandemic on people with intellectual and developmental disabilities (I/DD) has accentuated the need for disability housing policies that focuses on moving people out of institutional settings and into safe home- and community-based settings (HCBS). Here, we examine how COVID has enhanced the need for updated policies, ongoing challenges providers face, and opportunities for future change.
The Crisis
There are over 680,000 adults who live in institutional care settings in the U.S. In the wake of COVID-19, infection and mortality rates for this population have been higher than any other demographic group.
For example, an outbreak at an institution in Illinois required National Guard intervention, and alarmingly high case rates were also seen in residential centers in Texas, New Jersey, Massachusetts, and Maryland. Despite the increased focus on these facilities in the wake of the pandemic, advocates continue to push for more consistent data surveillance, particularly for large institutions.
Ongoing Challenges
Despite the 1999 Olmstead ruling that the isolation and segregation of people with I/DD was discriminatory, many barriers still exist to seeing those with I/DD able to fully integrate into their communities.
Key challenges faced by people with I/DD and HCBS providers include:
- Housing options may be severely limited in certain areas, leaving Medicaid-funded Intermediate Care Facilities and state-run institutions as the only options available.
- Individuals with I/DD who rely on Supplemental Security Income (SSI) are often priced out of rental markets in their local communities.
- State funding requirements vary; so HCBS often receives significantly less funding support than state-funded institutions or large facilities.
- Medicaid waivers, which can help individuals access financial coverage for care in HCBS, are limited. People with I/DD are placed on wait lists that will last 10 to 20 years for HCBS, and are often only left with a choice of institutional settings in the interim.
- Direct service providers (DSPs) who are able to provide in-home care are more difficult to find and retain due to low wages and increased stress during the pandemic.
In addition, providers face new challenges specific to the pandemic, such as losing revenue in the wake of program closures, averaging higher costs for staff, and taking on new spending for PPE and cleaning protocols.
Opportunities for Systemic Change
In order for individuals with I/DD to realize the autonomy and independence afforded to them by the Olmstead decision, many advocates believe systemic change is required to increase and improve access to HCBS. And with funding hanging in the balance for many providers, now is the time to push for legislative changes.
Specific opportunities for systemic change that could benefit HCBS providers and those in their care include:
- Mandatory Medicaid funding for HCBS;
- Reauthorizing Money Follows the Person (MFP) on a permanent basis; and
- Helping voters understand the need for policies (and legislators) that prioritize shifting funding away from institutionalized settings and toward HCBS to support the independence and autonomy of those with I/DD.
No matter the outcome of the 2020 Elections, providers are likely to face ongoing stress and decision-making as they work with tight budgets and decreased funding. Building and maintaining strong partnerships will be critical to ensuring safety and success.