Questioning Everything Propaganda
To: IL: Governor JB Pritzker, HFS, IDoA, IDPH, IDHS, Illinois Long-Term Care Council, Equip for Equality
To: Fed: DHS, HHS, OCR, CMS, DOJ (Civil Rights Div), ACL, National Council on Disability
Dear Officials,
In my research into housing, disability, and the persistent institutionalization of individuals in nursing homes for more than one year consecutively, I present a combined analysis comparing disabled versus non-disabled residents at both Illinois and national levels, followed by proposed solutions that emphasize cost savings for the state and federal governments while promoting greater independence for those who can benefit.
Using age as a proxy for disability status—where residents under 65 are typically considered disabled (often due to developmental, intellectual, chronic, or mental health conditions requiring long-term care), and those 65 and older represent the elderly population (many with age-related impairments but not always classified similarly in policy terms)—recent data reveal ongoing challenges. Nationally, long-stay nursing home residents (those in facilities for more than 90 days, with many exceeding one year) total approximately 1.2 million, with a median stay of 26 months. Of these, about 10% are under 65 (disabled proxy, roughly 120,000), while 90% are 65 and older. Among long-stay residents, approximately 75% have stays exceeding one year. The proportion of younger residents has increased over time, from around 10.6% in 2000 to higher levels in recent years, though long-stay specifics hover near 10-16.5% under 65 depending on sources.
In Illinois, with about 62,000 residents in certified nursing facilities (total, including short-stay), state-specific long-stay breakdowns by age are limited in the most recent reports, but patterns indicate a higher proportion of under-65 residents than the national average. Older data show approximately 14.7% under 65 (estimated around 9,000-10,000 if applied to current totals), compared to national figures of 10-16.5%. Illinois has made progress in reducing institutionalization for people with developmental disabilities, but many remain in long-term facilities for over a year, highlighting potential gaps in community housing and support.
This comparison underscores that Illinois faces a greater relative challenge in transitioning younger disabled individuals out of nursing homes, where institutional environments can impede access to disability benefits like SSDI or SSI due to low prioritization of legal processes. Nationally, the elderly majority dominates, but Illinois' elevated under-65 share points to the need for targeted interventions to prevent prolonged institutionalization.
To address this while saving taxpayer dollars and enhancing independence, I propose the establishment of a "Jump Start Program" for eligible long-term nursing home residents (stays exceeding one year) who demonstrate potential for community living through assessments. This program would provide at least one year of living expenses—including housing subsidies, utilities, and basic needs—to support transition to community-based settings. Extensions would be available for participants with pending disability claims or appeals, ensuring continuity and preventing forced returns. Participants would retain the unrestricted option to return to a nursing home without penalty if they cannot secure employment, are denied benefits, or fail to maintain appeals—reducing risk while encouraging self-sufficiency.
This model builds on proven programs like Money Follows the Person (MFP), which has transitioned tens of thousands nationally and generated substantial Medicaid savings by shifting from expensive institutional care (national average ~$119,000-$134,000 annually for a private/shared room) to more affordable home and community-based services (HCBS, often $42,000-$75,000 annually). In Illinois, nursing home costs average around $101,000-$117,000 annually for a shared/private room, making transitions highly cost-effective. Integrating with existing Illinois resources—such as the Supportive Living Program (offering lower-cost assisted living for low-income seniors/disabled) and Centers for Independent Living—could facilitate rollout. Federal MFP enhancements, including 100% reimbursement for supplemental services, provide funding pathways.
Such an approach aligns with Olmstead principles for community integration, reduces the institutional census (nationally over 1.2 million, with many capable of independence), and yields clear fiscal benefits by redirecting funds from high-cost nursing homes to community options. Prioritizing this in Illinois could alleviate the disproportionate burden on younger disabled residents and promote dignity through greater autonomy.
Sincerely,
Jason Page
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