BY JEFFREY LEWIS AND DR. MATTHEW SHAPIRO
Special to the Journal
Legacy Health Endowment’s Person-Centered Care (PCC) Program, launched in 2022 with CareLinx, stands alone in America as the only initiative laser-focused on the “forgotten middle” – middle-income seniors trapped in the Medi-Cal Gap, unable to afford long-term care yet ineligible for public assistance. By delivering professional in-home care to seniors who fall through the cracks of Medicare and Medi-Cal, the PCC Program has significantly reduced loneliness and caregiver burden, key drivers of institutionalization, enabling participants to age safely at home.
With the leadership of the Turlock City Council, this program has operated exclusively in Turlock over the past two years. Elderly residents not eligible for the State Medi-Cal program had access to needed in-home services to avoid being prematurely placed in a nursing home.
If the right California policies and funding were implemented, this unique, cost-effective model could allow the Newsom Administration to address the urgent needs of millions of middle-income families and ensure high-quality, dignified care for California’s aging population.
The crisis facing middle-income seniors is escalating. More older adults live alone than ever, with more than 20 percent struggling with activities of daily living (ADLs) like bathing and dressing, heightening risks of loneliness, mortality, and institutionalization. Despite 90 percent of seniors preferring to age at home, systemic barriers persist.
Medicare rarely covers long-term care, and Medi-Cal’s stringent eligibility, often requiring assets below $2,000, excludes middle-income families, forcing them to deplete savings, divorce to protect a spouse’s assets, or forgo care. Non-professional caregivers, typically family, face burnout, anxiety, and depression, which research links to higher rates of care recipient institutionalization and mortality. Affordable alternatives are critical, with assisted living costing $5,350 monthly on average.
Initially implemented in Stanislaus and Merced counties, California, the PCC Program offers a groundbreaking solution. From September 2022 to July 2024, we served 175 low-income seniors ineligible for Medi-Cal, who relied on unpaid friends and family to care for them. They averaged 76 years of age and had chronic conditions like impaired mobility (33 percent of participants), diabetes (31 percent), dementia (31 percent), and cardiovascular disease (27 percent). Participants received up to 32 hours of professional in-home care monthly, including ADL and instrumental ADL support, companionship, and biopsychosocial health assessments via the CareLinx app, overseen by a Registered Nurse coordinating referrals to behavioral health, pharmacy, home safety, palliative care, and skilled care providers. Community-based recruitment ensured we reached those most in need.
Our results are compelling. Among 54 friend and family caregivers with positive baseline scores on the 10-item Burden Scale for Family Caregivers (BSFC-s), those most stressed saw a 63.6 percent reduction. In contrast, the average score among the entire cohort dropped 39.1 percent. For 23 care recipients with significant loneliness on the Three-Item Loneliness Scale, scores decreased by 23.4 percent, with 47.8 percent moving to “No or Mild” loneliness.
These outcomes reduce institutionalization and mortality risks, supporting seniors and caregivers alike. At $973 per participant monthly, less than one-fifth the cost of assisted living, the PCC Program is both effective and economically sustainable.
The PCC Program’s singular focus on the forgotten middle highlights the need for state and federal investment in home-based care. Unlike Medi-Cal, which serves only the poorest, our model supports middle-income families, reducing healthcare costs and institutionalization.
Based on our findings, we propose:
1. Offering a Home-Based Care Pilot (Person-Centered Care): This would be a demonstration project piloted in California that the Governor would determine. It would allow the Administration to build a database and demonstrate a commitment to addressing the needs of the elderly middle-income population; and
2. Foster Public-Private Partnerships: Encourage collaborations between government, nonprofits, and private entities like CareLinx to deliver community-based care.
Addressing rural California's community-based long-term care needs cannot continue to be ignored. The needs of middle-income seniors are long overdue and significant. The time for action is long overdue.
— Jeffrey Lewis is the President and CEO of Legacy Health Endowment. Matthew Shapiro, MD, MS, is the Chief Medical Officer for CareLinx. The words expressed are their own.
