Structured family caregiving starts with a visit. Before a family caregiver is paid to provide daily care under the program, the provider agency’s nurse or caregiver coach goes to the home, assesses the person who will be cared for, and builds the plan the caregiver will be trained to carry out. Indiana requires the training to be “based on the individual’s needs” and two quarterly home visits by a caregiver coach or RN. Ohio requires an initial in-person home visit, monthly contact after it, and eight hours of initial training. Georgia has the nurse and the care coordinator each visit monthly, with eight hours of individualized training a year tied to assessed needs.
Every one of those requirements turns on the same thing: the agency knowing what the person’s medical situation actually is. Not what the daughter remembers from the hospital in the spring, and not what the referral form had room for. The diagnosis, the most recent physical, the medications, what the therapist found, what the hospital discharged them on.
That history was written somewhere else. This is what the nurse needs from it, where each piece lives, and how to have it before the visit rather than after.
The seven records
The list is short on purpose. It is what the clinical half of a plan of care rests on, and it is the same set Georgia’s waiver review asks a provider to substantiate.
Diagnosis documentation. Chart notes from the person’s own physician that name the chronic or progressive condition: severe osteoarthritis, advanced cardiovascular disease, diabetes, Alzheimer’s disease or another dementia. The plan of care starts from what has been diagnosed, and the caregiver’s training is specific to it. Dementia care and post-stroke care are different eight hours.
The history and physical. The most recent comprehensive examination, with its date. How recent it is decides whether the nurse is working from the current picture or last year’s.
The current medication list. Every prescription and dose, from every prescriber. The complexity of daily medication management is a large part of what the caregiver is being trained to carry, and the list in the family’s kitchen drawer is rarely the list the cardiologist thinks is active.
Therapy notes. Physical and occupational therapy evaluations, where they exist, covering mobility, fall risk and assistive devices. These are the closest thing in the record to a description of what the person can and cannot do, and the nurse’s own assessment is built against them.
Cognitive assessments. Where there is cognitive decline, the formal screening score or the neurologist’s evaluation. It decides whether the plan includes supervision, and how the caregiver is trained to handle it.
Discharge summaries from the last three to six months. A person coming home from a hospital stay is the first visit the agency most has to get right: the discharge medications, the follow-up appointments, what changed. The summary says all of it, and it is at the hospital.
Skilled nursing facility records, where the person is coming from one. Current care logs from a short-term rehabilitation or nursing stay establish the baseline of need the home plan picks up from.
What is not on the list, and why
Two things a nurse might expect here are left off deliberately.
The first is the functional assessment: who helps the person with which activities of daily living. That is the nurse’s own in-home observation, and in most states it is also the case manager’s or the Area Agency on Aging’s level-of-care determination. No retrieved chart records it. A record can say the person has severe osteoarthritis; it cannot say who helps them out of the bath. The agency’s visit is where that gets established, and it should not be inferred from paper.
The second is the caregiver’s daily notes. Every structured family caregiving program requires the caregiver to document the day, usually in the agency’s own system, and the agency keeps that record for the life of the service. Those notes are produced in the home after the service starts. The seven records above are the opposite: they exist before the referral, at other organizations, and the agency has to go and get them.
Where each record lives
| Record | Who holds it |
|---|---|
| Diagnosis documentation, the history and physical | The primary care physician, and any specialist managing the main condition |
| The medication list | Every prescriber, and the pharmacy’s fill history |
| Therapy notes | The therapy provider, often a hospital or facility outpatient department |
| Cognitive assessments | The neurologist or the primary care physician |
| Discharge summaries | The hospital, and sometimes a second hospital in a second health system |
| Skilled nursing facility records | The facility |
For a person with three chronic conditions, that is four or five organizations, each with its own release process, each answering on its own schedule. The family can help, and often arrives with a folder. The folder is rarely current and never complete.
How agencies get them today
By fax, mostly. The intake coordinator sends a request to each office with the family’s signed release, and follows up by phone. A hospital that runs an EHR portal for community providers may grant the agency a read-only account, which shows that hospital’s chart and nothing else, after an application that the hospitals themselves say takes two to three weeks. Where the agency is a member of a state health information exchange, it can query that.
Each of these is a request to one place. The record is in five.
Getting them before the visit instead of after
The alternative is one request that goes to every organization connected to the national health information networks, Carequality and CommonWell, which between them reach most hospitals and health systems and a growing share of practices. The agency’s treatment relationship with the person, the start of service, is the basis for the request. What comes back is the documents each connected organization holds: the physician’s notes, the discharge summary, the medication list, the therapy evaluation, each one named by the organization that released it and dated.
Organized for the first visit, that is a record the nurse can read in the car: the diagnosis documentation first, the most recent history and physical marked as such, the discharges from the last six months ahead of the older history, duplicates released by two organizations shown once, and a line for every source that has not answered, so the one office that did not respond is a phone call on Tuesday rather than a surprise on Thursday. The networks move documents, not images, and a practice that is not connected does not answer, so the fax does not disappear. It stops being the system the visit waits on.
That is what Vivlio builds for structured family caregiving providers: the seven records, assembled and organized before the nurse’s first visit, in every state the program runs.
