What changed for caregivers this week — September 28, 2026

CMS is rewriting hospice rules for the first time in 20 years, New York's self-directed home care program may be heading toward a union, senior living operators are quietly struggling to staff for sicker residents, and a Florida nonprofit is training families to handle dementia crises before they become hospitalizations — a week where the systems around caregiving were under more pressure than the headlines suggested.

CMS is updating the hospice Conditions of Participation for the first time since 2006 — and families should understand what is at stake

The Centers for Medicare and Medicaid Services has begun the process of revising the hospice Conditions of Participation — the federal rules that govern what a Medicare-certified hospice must do and how it must operate — for the first time in 20 years, according to Hospice News. The CoPs cover everything from how hospices assess patients at admission to how they manage pain, coordinate with families, and handle complaints. A revision process of this scope typically takes a year or more and includes a public comment period before any final rule is issued.

For families currently receiving hospice services, nothing changes immediately — existing rules remain in force throughout the revision process. But the update matters because the current rules were written before smartphones existed, before telehealth was a standard care delivery tool, and before the hospice industry had grown to the scale and complexity it has today. The revision is an opportunity for CMS to address gaps that families and clinicians have been reporting for years: inconsistent standards for after-hours responsiveness, unclear requirements around family caregiver support, and rules that have not kept pace with how dementia and other non-cancer diagnoses progress. When the proposed rule is published in the Federal Register — which will be announced publicly — there will be a comment window during which any family member can submit written input based on direct experience. The National Hospice and Palliative Care Organization at nhpco.org will track the rulemaking timeline and can alert families when that window opens.

New York's CDPAP workers have filed for a union election — and families using the program should know what a yes vote would mean for them

Caregivers working in New York's Consumer Directed Personal Assistance Program have filed for a union election with 1199SEIU United Healthcare Workers East, according to Home Health Care News. If the workers vote to unionize, approximately 190,000 CDPAP workers — many of them family members who are paid by Medicaid to care for a relative — would be covered by the resulting collective bargaining agreement.

CDPAP is the program that allows a Medicaid-eligible person with a disability or chronic condition to hire, train, and direct their own personal care worker, including a family member. It is the program that makes it possible for a daughter to be paid to care for her mother, or for a spouse to receive compensation for care that would otherwise be unpaid. A union election in a workforce of this size and structure is unusual — CDPAP workers are not employees of a single agency but participants in a state-administered program — and the legal and logistical questions about how collective bargaining would work in that context are genuinely unresolved. For families currently using CDPAP, the practical near-term impact is limited: the election has been filed but not yet held, and any negotiated changes to wages or working conditions would take time to materialize. The more immediate concern is whether the election process itself, or the political attention it draws, affects the ongoing implementation of the state's consolidation of CDPAP under a single fiscal intermediary — a transition that has already caused significant disruption for families over the past year. Families with questions about their current CDPAP enrollment status can contact the New York State Department of Health's CDPAP information line or their current fiscal intermediary directly.

Senior living operators say residents are arriving sicker than before — and families placing a parent should ask harder questions about staffing

A new industry survey found that rising resident acuity and staffing limitations are the two most significant operational pressures facing senior living communities in 2026, according to Senior Housing News. Operators reported that residents are moving into assisted living and memory care with more complex medical needs than in prior years — a pattern driven partly by families delaying the move as long as possible and partly by hospitals discharging patients faster. At the same time, the workforce needed to care for higher-acuity residents has not kept pace, and some operators said the industry is not prepared for the demand cycle that is coming as the baby boom generation moves fully into the age range requiring care.

For a family currently evaluating a senior living community for a parent, this data is a reason to ask specific questions rather than rely on marketing materials. The relevant questions are not about amenities — they are about staffing ratios on the overnight shift, how the community handles a resident whose needs increase after move-in, and what the process is when a resident's condition exceeds what the community is licensed or staffed to manage. A community that cannot answer those questions with specifics is telling you something about its operational transparency. The state long-term care ombudsman program — reachable through the Eldercare Locator at eldercare.acl.gov or 800-677-1116 — can provide complaint history for any licensed community and explain what the state's staffing requirements actually require.

Empath Health is training family caregivers to handle dementia crises before they become emergency room visits

Florida-based nonprofit Empath Health launched an immersive dementia education program in early September, now available across nine Florida counties, that trains not only clinical staff but family caregivers and first responders in how to recognize and respond to dementia-related crises, according to Hospice News. The program is designed to reduce avoidable hospitalizations — the emergency room visits that happen when a person with dementia has a behavioral episode, a fall, or a sudden change in condition that a prepared caregiver might have been able to manage at home.

The gap this program is trying to close is real and well-documented: families caring for a person with dementia are often managing crises with no training, no clear protocol, and no one to call at 2 a.m. who can help them decide whether a situation requires an ambulance or a different response. An emergency room visit for a person with dementia is frequently harmful — the unfamiliar environment, the noise, the disruption to routine — and often results in a hospitalization that accelerates decline. Empath's program is currently limited to nine Florida counties, but the underlying training content reflects a broader evidence base. Families outside Florida caring for someone with dementia can access structured caregiver training through the Alzheimer's Association's free online and in-person programs at alz.org, and through the Teepa Snow Positive Approach to Care curriculum, which is available in multiple formats including self-paced online modules. A family that has not yet had a formal conversation with the care team about what to do — specifically — when a crisis happens at home is overdue for that conversation.

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