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“Do I Have Rights as a Caregiver?” Understanding the CARE ACT

As we close out the year and get ready for 2019, it’s important that caregivers are recognized for all the support they give daily to their loved one, and to make sure they understand their rights. Most caregivers know the sacrifices they make but many may be unaware of a newly enacted law that gives them some protection in their role as a caregiver.

The CARE Act was signed into law by Governor Baker in November, 2016 and enacted in January, 2017. The acronym stands for Care Advise, Record, and Enable.  Massachusetts was the 38th state to pass this law; now 40 states have this law for caregivers. Other New England states have enacted the CARE Act, including New Hampshire, Maine, and Rhode Island.

When caring for a loved one who is chronically ill, he or she is likely to be hospitalized at some point.  A loved one’s hospitalization can leave the caregiver feeling overwhelmed and confused. The CARE Act has 3 basic provisions that assist caregivers during that stressful time.

First, at the point of admission to the hospital, a patient must be given the opportunity to designate a caregiver. This is considered the Record provision. Before the CARE Act, hospital admissions staff asked about a health care proxy, who may or may not be that person’s caregiver. A Health Care Proxy is an individual who has been designated by the person/patient to make decisions for him or her if they lack capacity to make their own health care decisions. A designated caregiver may or may not be the Health Care Proxy.  A caregiver is the person who is providing care to the patient whether or not they lack such capacity.

Second, the Caregiver will be informed if their loved one is discharged and where they are being sent. This notification would be included in the Care Advise provision of the law. For example, if you are the caregiver for your mother and the hospital is looking to discharge her to a rehab setting, the hospital staff need to inform you, as her caregiver, of their plan to discharge your mother and where she will be going.  Notifying a caregiver usually happens if the caregiver lives with their loved one.  Before the CARE Act, caregivers who lived outside the person’s primary residence were not always notified of their loved one’s discharge. This law protects caregivers who have been recorded in their loved one’s medical record to be informed of their discharge, regardless of where the caregiver resides.

The third provision of the CARE Act is probably the most beneficial for caregivers to know in order to understand their rights and therefore the patient’s rights as well.  It is the Enable provision of the law which states that the hospitals must provide an explanation and demonstration of new medical tasks that caregivers are expected to perform at home while providing care. For example, if you are your father’s caregiver and he is now diabetic and needs insulin injections that he unable to do for himself, you would need to be taught how to provide this medication as an injection and shown how to perform this task. Another example would be if your father now has to use a walker when ambulating. As his caregiver, you would need to be shown how to assist him with the correct positioning, etc..

Caregivers may often feel that they do not have a say and their voices are not heard when trying to advocate for their loved one. The CARE Act is a step in the right direction to recognizing the vital role played by caregivers and all that they are expected to do for their loved one, especially in the healthcare arena.

AARP has a link to download wallet size cards explaining the CARE Act. Caregivers can download this card and keep it as a handy reference during a loved one’s hospitalization.  The link also identifies which states have enacted this law.

http://www.aarp.org/caregiving/local/info-2017/care-act-aarp-wallet-card.html