Each year, the “Case for Inclusion” report examines how well states are meeting the needs of people with intellectual and developmental disabilities (I/DD). The 2022 report, released in collaboration by United Cerebral Palsy (UCP) and ANCOR Foundation (ANCOR), shows an alarming increase in the number of people on home- and community based services (HCBS) waiting lists. In this article, we examine the report’s key findings, including post-2020 data, core challenges, and future opportunities for advocacy.
Recent Data
The “Case for Inclusion” report was last published in 2020. Since that time, the total number of individuals with I/DD who are on HCBS waiting lists has increased by almost 117,000 people. Potential reasons for this rise in demand include the following:
- Since 2018, the number of large, state-run facilities being closed has steadily risen. When data was collected in 2018, a total of 17 sites, including 16 states and Washington, D.C., had closed all of their state-run institutions. By 2022, Montana and Tennessee were also added to that list.
- Despite the decrease in places offering services to people with I/DD, the number of people waiting for services surged to almost 590,000 in total.
- Of those nearly 590,000 people, 78% hail from one of five states: Florida, Illinois, Louisiana, Ohio and Texas.
- Only 20% of people with I/DD (or 1 in 5) who are receiving employment or day supports were noted as participating in integrated employment.
Core Challenges
One of the core challenges underlying the disconnect between supply and demand for services is staffing shortages due to DSP turnover. Although this topic was already being discussed ahead of the pandemic, COVID-19 significantly increased the issue.
According to the report, 1 out of every 8 direct support professional (DSP) full-time positions across the country were vacant in 2020. This rate demonstrated a 45% increase in position vacancies between 2019 and 2020.
Other challenges identified by the reported include:
- Ongoing and unnecessary institutionalization of people with I/DD;
- A lack of parity in employment opportunities for people with I/DD in comparison to the general population; and
- Unmet need for HCBS services that requires greater investment and enhanced supports.
Future Advocacy
“If there has been any silver lining at all from the COVID-19 pandemic, it has been that policymakers now understand the wide-reaching repercussions of failing to invest in the services on which people with I/DD rely and the vast network of providers who deliver those services”
– Barbara Merrill, Chief Executive Officer, ANCOR
Following publication of the 2022 report, both UCP and ANCOR have urged federal lawmakers to invest in HCBS. They have also advocated for greater pressure on states to raise the Medicaid reimbursement rates that are paid to providers of disability services.
Not only is this essential for addressing the damage done during two decades wherein the emphasis was placed on institutionalization to meet the needs of individuals with I/DD, it’s also become critical for addressing the stressors and lasting effects as a result of two years within a global pandemic.
You can access the full 2022 “Case for Inclusion” report by clicking this link.