H.R.1 Threatens Access to Care for Individuals with Intellectual and Developmental Disabilities
People with I/DD face new barriers to Medicaid services due to new work reporting requirements and increased frequency of eligibility redeterminations, among other issues.
Authors: Christopher Cantrell, Anna Lansky and Jonah Frohlich
Editors: Melinda Dutton and Amanda Eisenberg
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tl;dr
More than seven million people in the United States have an intellectual or developmental disability (I/DD). One in three individuals with I/DD are enrolled in Medicaid, which provides health coverage, long-term services and supports, and home and community-based services.
H.R.1 includes major changes to Medicaid eligibility and cost-sharing for expansion adults. While certain individuals with I/DD are exempt, we expect that many individuals will struggle to demonstrate eligibility for these exemptions and compliance with the requirements, leading to significant drops in coverage and access to services.
This will affect people with I/DD, as well as their caregivers, service providers, and communities.
The 80 Million Impact
The enactment of H.R. 1’s Medicaid work reporting requirements, more frequent eligibility redeterminations, and higher co-pays will create new barriers to coverage and services for individuals with I/DD, their caregivers, and families. While the law provides exemptions from some requirements for individuals with I/DD and caregivers, we expect that complexities in navigating eligibility processes and documentation requirements will cause many of these individuals to lose coverage. H.R.1 places more pressure on states, MCOs, case managers, providers, and others to establish communication, information sharing, and client engagement strategies to help individuals with I/DD and their families navigate these new complexities and minimize disruptions in coverage and access to services.
Work Reporting Requirements
Effective January 1, 2027, states are required to condition Medicaid eligibility on compliance with work reporting requirements for adults ages 19-64 who are enrolled through the Medicaid expansion group. Individuals with I/DD who qualify for Medicaid on the basis of their disability (i.e., qualify through Supplemental Security Income (SSI)) are not subject to these requirements. This makes sense. Only 19% of individuals with I/DD are employed in the United States, compared to 61% for people without disabilities. However, some estimates indicate that as many as two-thirds of Medicaid-covered individuals with disabilities are enrolled through other eligibility pathways, including the adult expansion group. Many individuals with disabilities are not enrolled through the SSI pathway for a variety of reasons, including the stricter documentation requirements, lengthy wait times for eligibility determinations, or having a disability that does not meet SSI requirements. And individuals with I/DD in the expansion group will be subject to work requirements unless they are able to demonstrate that their disability meets impairment criteria outlined in the law. Further, many caregivers to individuals with I/DD rely on Medicaid (or Marketplace plans) for their health care coverage. While parents, guardians, and caretaker relatives of individuals with disabilities also are exempt under the law, these individuals will also need to establish their eligibility for this exemption or demonstrate compliance to maintain coverage.
Even for individuals with I/DD who qualify for the exemption, early experiences with work requirements in Arkansas and Georgia show that many individuals who were exempted still lost coverage. If an individual fails to demonstrate compliance with, or an exemption from, the work requirements, they will be denied or terminated from Medicaid coverage and barred from receiving subsidized coverage through the Marketplace.
The law requires states to leverage available data to streamline the process for demonstrating exemptions and compliance with work reporting requirements. For I/DD populations in particular, this will require breaking down information silos and leveraging systems across agencies (e.g., Medicaid eligibility and claims systems, employment and labor databases) to identify exemptions and document compliance. Given the complex nature of documenting disabilities, states will need to couple these efforts with outreach to individuals and families to fill in information gaps.
Increased Eligibility Redeterminations
Starting December 31, 2026, states must redetermine eligibility for adults enrolled through Medicaid expansion or an expansion-like section 1115 waivers once every six months, doubling the annual redetermination frequency limit previously in place. Our modeling team anticipates that millions of people will lose their coverage from more frequent redeterminations. Individuals with I/DD are particularly vulnerable to losing coverage due to a variety of factors, including:
Inaccessible communication: Notices are written in complex, bureaucratic language, often not available in plain language or other languages, making them difficult for people with I/DD to understand.
Lack of support and coordination: Many individuals don’t receive the help they need to understand or complete the redetermination process and paperwork. Medicaid and I/DD eligibility systems are often siloed, and case managers — when available —are often not trained in supporting individuals in maintaining coverage.
Caregiver burden: Individuals with involved families fare better, but even families struggle due to work, caregiving duties, and the complexity of the system.
Coverage losses can be life threatening for individuals with I/DD, particularly for people with co-occurring medical complexity and fragility, or those without “natural supports” like relationships with family, friends or community members. Without Medicaid access, individuals with I/DD may lose their ability to participate in daily activities, be forced to move to more restrictive settings, or end up in emergency rooms, jails or hospitals — scenarios that may also play out for people with serious mental illness, housing instability or substance use disorder.
Higher Costs for Individuals with I/DD Enrolled in Medicaid
Effective October 1, 2028, H.R.1 requires states to impose cost sharing for certain services for Medicaid expansion enrollees with incomes above 100% of the Federal Poverty Level (FPL), which can be as high as $4 for preferred drugs, $8 for non-preferred drugs, and $35 for other services (subject to an aggregate limit of 5% of family income). States also have the option to permit providers to deny services if an individual does not pay the required cost sharing. Individuals with I/DD enrolled in the expansion group will be subject to cost-sharing if they have incomes above 100% of the FPL. This will increase barriers to needed services for individuals with I/DD, who utilize key services like medications at higher rates than individuals without disabilities.
Heightened Instability Across I/DD Provider Networks
The combination of more frequent eligibility redetermination, work requirements, and higher costs for services will mean more churn and coverage losses for individuals with I/DD. This will create more instability for direct support professionals (DSPs) and other providers that serve individuals with I/DD – groups that already face low reimbursement rates and wages, and high costs.
Over time, this may lead to reductions in provider capacity as providers and provider organizations grapple with unpredictable program enrollment and caseloads. These challenges will be exacerbated by other changes to Medicaid financing in the enacted bill, including changes to provider taxes and state-directed payments, which will place further burden on state budgets and health systems.
The Bottom Line
Taken together, the proposed changes in the reconciliation bill present significant threats to the stability and accessibility of Medicaid for individuals I/DD. While some exemptions are intended to protect this population, the real-world implementation of similar policies has shown that many individuals with I/DD are at risk of falling through the cracks — with potentially devastating consequences.
Help shape The 80 Million: What should we write about next?
Excellent summary and analysis.