Informal caregiver: registry, respite and when you can be paid

This is the law that recognizes the caregiver as a figure with rights of their own, not just the relative who "keeps an eye out". Its logic is simple: if the country rests partly on unpaid care, the State should train whoever provides it, give them rest, count them in emergency plans and, in one very specific case, be able to pay them. None of this activates itself: there is a voluntary registry at the Department of the Family and requirements the law spells out in detail.

An informal caregiver is the natural person, guardian or person in charge who assists and supports a care recipient in one or more essential activities of daily living without receiving economic compensation. It may be a relative, partner, friend, neighbor or anyone with a significant relationship with the person receiving care. The law expressly excludes two cases: it does not apply to legal entities — corporations, entities or businesses, for profit or not, that provide caregiver services to patients — and it does not apply to parents or legal guardians caring for a minor whose support needs match those normally associated with their current developmental stage. The care recipient is the person who needs and receives that assistance: an older adult with long-term care needs, a person with disabilities, a mental health patient or someone with developmental deficiencies. The law defines an older adult as anyone aged sixty (60) or older.

• Assisting and supporting a care recipient in one or more essential activities of daily living, without receiving economic compensation.Verified against the official source
• To join the Registry: filing a voluntary application, accompanied by the proper medical certification attesting to the care recipient’s need for assistance.Verified against the official source
• To be a paid incidental caregiver: a sworn statement before a notary that you were dismissed or had to resign as a direct consequence of the caregiving, the dismissal or resignation letter, evidence you previously worked at least 40 hours a week, qualification by the Department of the Family, and the corresponding training before starting to be paid.Verified against the official source

• The medical certification attesting to the care recipient’s need for assistance, required for the Registry.
• The written certification from the Department of the Family: the law provides that after registering you, the Department will notify and certify in writing those identified as informal caregivers.
• For the incidental caregiver: the sworn statement before a notary and the dismissal or resignation letter, which the law requires be filed together.

1. 1

   Step 1: Check whether what you do is "informal care" under the law

   The law does not speak in the abstract: it lists the essential activities of daily living in two groups. The basic ones are feeding, ambulating, continence, personal hygiene, using the bathroom and dressing. The instrumental ones require more complex thinking skills and include companionship and emotional support, managing finances, shopping, managing communication with others, cleaning and maintaining the home, managing medications, preparing meals and transportation. If you assist someone with one or more of these without pay, you are an informal caregiver for this law’s purposes even if you never called it that. The law also clarifies what counts as a residence: the home the care recipient considers their habitual dwelling, and it expressly excludes rehabilitation centers, hospitals, convalescent homes, assisted-living facilities and care homes licensed by the Department of the Family.

2. 2

   Step 2: Access to health information and the medical team

   This is the right that settles the waiting-room scene. Article 5(c) says that, in order to guarantee the best service and care practice, the caregiver shall receive access to all health information and be included as an essential member and collaborator in the medical care team of the person they support. The law sets two conditions and they must be met: the consent of the care recipient or their legal guardian, and compliance with HIPAA, the federal health information privacy law. Item (d) adds a formality worth completing: having fulfilled the formality of being designated as informal caregiver by the care recipient or their legal guardian, the caregiver shall have access to all information on good care practices from health providers and any other entity attending to that person’s health and wellbeing. That is: the explicit designation, made by the person receiving care, is what opens that door.

3. 3

   Step 3: When you can be paid: the incidental caregiver

   The law creates an in-between figure and it is worth understanding whole before getting hopeful. The incidental caregiver is that informal caregiver who, meeting all requirements, may be hired for a fixed term with pay to care for a relative; they do not stop being an informal caregiver and enjoy all the rights as such. The right, in Article 5(g), is to be considered as an option to be hired when a government entity or an entity receiving public funds decides to contract staff to care for that older adult. The requirements are four and the law writes them without slack. First: evidencing by sworn statement before a notary that the family caregiver was dismissed or found it necessary to resign from their most recent job as a direct consequence of the obligations arising from caring for the older adult, accompanying the statement with the dismissal or resignation letter. Second: evidencing that, before assuming the care and at the time of dismissal or resignation, they worked at least forty (40) hours a week, as an employee or on professional services, or the equivalent; the law expressly excludes those who worked part time or have another income source related to work. Third: the Department of the Family may establish additional regulation for qualification. Fourth: once qualified and before being able to start being paid, they must take the corresponding training through the Department of the Family. And the law closes with an honest warning: that preparation will be limited to the basic and essential, and shall in no way be understood as professional training or as qualifying to practice in the future as a formal caregiver.

4. 4

   Step 4: Respite: rest recognized by law

   The law defines respite as relief and care services for the informal caregiver so they benefit from healthy and meaningful rest from their responsibilities, aimed at giving them time to look after their own wellbeing and mental health. Article 5(h) writes it as a right: to have the State make respite services available to them. Article 9 says who moves it: the Department of the Family identifies, coordinates or refers informal caregivers to respite opportunities, together with related programs of the Department of Health, the Office of the Elderly Advocate, the Disability Rights Office and the municipalities, as applicable, subject to requirements and available funds; and it may also refer them to private organizations, for profit or not. The services must target four areas the law names: an educational and care plan for the informal caregiver, direct care and emotional support for the older adult, home hygiene, and errand management. That phrase "subject to available funds" is in the text and it is honest to know it before counting on the service.

5. 5

   Step 5: The Registry is voluntary, and emergency priority does not depend on it

   Article 6 creates the Registry of Informal Caregivers under the Department of the Family, which keeps a database for official statistics and to build a profile of the country’s caregivers. To join you must file a voluntary application accompanied by the proper medical certification attesting to the care recipient’s need for assistance; collaborating entities may also collect and submit the information, following the Department’s protocols and with the caregiver’s due consent. After registering you, the Department notifies and certifies in writing. The reports and statistics are confidential and may only be used in epidemiological, statistical and scientific research and for educational purposes, provided neither the caregiver’s nor the recipient’s identity is disclosed; those with access sign confidentiality agreements that remain in force even after their relationship with the Registry ends. Now, the fact that keeps someone from being left out of help for not having registered: Article 14 says informal caregivers, whether or not registered in the Registry, shall receive priority attention in state, municipal and non-governmental emergency plans. That same article requires every municipality, department, agency and organization to identify in its action plan a section of specialized attention for informal caregivers of older adults, and to include an inventory of older adults dependent on medical equipment.

6. 6

   Step 6: The training and its five competencies

   The right to receive training and continuing education is in Article 5(b), and the law clarifies what for: not only to care better, but so that in practice the caregiver can look after themselves against any situation that may pose a risk to their physical, mental and emotional health or quality of life. The competencies the law names are five: legislation and rights of older adults and informal caregivers; skills for providing physical and emotional health care from the informal caregiver’s role; self-care strategies to promote the caregiver’s holistic wellbeing, including respite; managing financial, legal and social matters and future planning; and other topics contributing to strengthening caregivers’ visibility, participation and social integration. Article 8 puts the Department of the Family in charge of identifying and referring to workshops, and says how often: it will follow up with registered informal caregivers so they attend at least two (2) workshops a year, with skills such as first aid, home safety, treatment of the most common chronic illnesses, hygiene and personal care, elder abuse, nutrition, use and knowledge of assistive equipment, and self-care.

7. 7

   Step 7: Work: what the law says and what it refers to other laws

   Article 5(e) recognizes the right to request reconciling informal caregiving with professional life, and makes it concrete in two points. One: an informal caregiver has the right to request changes to their work schedules as Act No. 379 of 15 May 1948, known as the Working Hours Act of Puerto Rico, provides. Two: they shall be protected in using sick leave to care for the care recipients in their charge, subject to the provisions and applicability of Act 180-1998. Note how the first is worded: it is a right to request the change, and the mechanism comes from Act 379-1948, not this one. Article 10 of Act 82-2023 appears as "Omitido" in OGP’s compilation, with the note that it amends Article 8 of Act 379-1948; we did not read that law for this guide and therefore do not describe here how the request is made or what the employer may answer.

The Department of the Family is the agency the law puts in front: it administers the Registry of Informal Caregivers, notifies and certifies registrants in writing, issues the implementation regulation under Act 38-2017, identifies and refers to training workshops, and coordinates or refers respite opportunities together with the Department of Health, the Office of the Elderly Advocate, the Disability Rights Office, the Mental Health and Anti-Addiction Services Administration and the municipalities. For hiring as an incidental caregiver, it is also the Department of the Family that qualifies the candidate and provides the training that must be taken before starting to be paid. What we do not publish: a phone number, form or specific address to join the Registry, because Act 82-2023 does not name one and we will not assume it.

• Believing you must be in the Registry for everything: emergency plan priority applies whether registered or not.
• Going to the Registry without the medical certification attesting to the care recipient’s need for assistance.
• Showing up at the hospital without the caregiver designation made by the person you care for or their legal guardian.
• Expecting the incidental caregiver route to be a job you apply for: it is a preference when someone else decides to hire.
• Trying the incidental caregiver route after working part time: the law expressly excludes it.
• Starting to be paid as an incidental caregiver without first taking the Department of the Family training.
• Counting on respite as an unconditional right: the law subjects it to applicable requirements and available funds.
• Thinking the law covers someone caring for a minor with needs normal to their developmental stage: that is excluded.

These are the government pages this guide is based on.

• Departamento de la Familia

  Familia

  bvirtualogp.pr.gov

• Department of the Family

  Familia

  www.familia.pr.gov