Caregivers play a significant role in supporting and assisting individuals with disabilities. Under HIPAA, they have certain rights regarding the access and management of disabled protected health information (PHI). Caregivers who are designated as personal representatives have certain rights to access and manage health-related information.
Who is a caregiver?
A caregiver is someone who provides assistance, support, and care to individuals who have difficulty performing daily tasks or need assistance due to various reasons. This can be a family member, friends, or professional caregivers who provide physical, emotional, and practical support to individuals in need.
Caregivers and HIPAA
Personal representatives
HIPAA grants access to an individual's PHI to their personal representatives. These are individuals authorized to make healthcare decisions on behalf of the patient or act as their legal representatives. Personal representatives can include individuals designated in advance directives, such as healthcare powers of attorney, legal guardians, or individuals appointed by a court.
Designated persons with authorization
If a patient has provided a valid HIPAA authorization, they can designate specific individuals who are authorized to access their PHI. This authorization may be given to family members, friends, or caregivers involved in the patient's care or payment for care.
Family members or friends rule
HIPAA allows healthcare providers to share relevant PHI with family members, friends, or other persons involved in the patient's care or payment for care if the patient does not object. This is often referred to as the "Family and Friends" rule.
Obtaining consent as a caregiver
Persons with disabilities must provide explicit consent to authorize the caregiver's access to their health records. This consent can be in the form of a written document, a signed HIPAA authorization form, or even a documented verbal agreement, depending on the healthcare provider's requirements. Persons with disabilities may need to provide documentation or establish the caregiver's status as their representative through a healthcare power of attorney, legal guardianship, or court appointment.
Once the HIPAA authorization form is completed, it should be submitted to the healthcare provider or entity that holds the persons with disabilities health records. This is then reviewed by the healthcare provider to ensure its validity and completeness. They may also verify the persons with disabilities' consent and the caregiver's status as a personal representative.
Related: HIPAA compliance when communicating with patients with disabilities
Accessing PHI without consent
In certain situations, a caregiver may have access to health information without explicit consent under HIPAA. These situations are generally based on the caregiver's role in providing care and the best interest of the persons with disabilities. These include
- Emergencies: In emergencies where persons with disabilities are unable to provide consent due to their condition, healthcare providers may share relevant health information with caregivers to ensure appropriate and timely care is provided.
- Implied consent: If the person with disabilities is present and does not object to the caregiver being involved in discussions or accessing their health information during healthcare appointments or discussions, it may be considered implied consent for the caregiver's involvement.
- Incapacity: When persons with disabilities cannot make decisions due to their condition, healthcare providers may share health information with caregivers acting as their legal guardians or legally authorized to make healthcare decisions on their behalf.
- Harm prevention: If a healthcare provider believes, based on professional judgment, that sharing health information with a caregiver is necessary to prevent serious harm to persons with disabilities or others, they may disclose the information without explicit consent.
Related: HIPAA Compliant Email: The Definitive Guide
Sharing PHI with family members or third parties
Under HIPAA, a caregiver generally cannot share a person with disabilities' health information with other family members or third parties without the explicit authorization or consent of the person with disabilities. The privacy rule places restrictions on the disclosure of PHI to maintain the confidentiality and privacy of an individual's health information. Exceptions are permitted under the following circumstances:
- If the caregiver is designated as a personal representative of the persons with disabilities under HIPAA, they may have the authority to access and disclose the individual's health information as permitted by law.
- If the persons with disabilities are present and do not object, a caregiver may share relevant health information with other family members or third parties who are directly involved in the individual's care or payment for care.
- In situations where persons with disabilities cannot make decisions, healthcare providers may share health information with family members or third parties if it is determined to be in the individual's best interest.
Legal considerations that caregivers should be aware of
Advance Directives
Advance directives are legal documents that allow individuals to express their healthcare preferences and appoint a healthcare proxy or agent to make decisions on their behalf if they become incapacitated. Caregivers should ensure that persons with disabilities have an up-to-date advance directive, which can guide medical decision-making and ensure the person's wishes are respected.
Guardianship or Conservatorship
When persons with disabilities cannot make healthcare decisions, caregivers may need to pursue guardianship or conservatorship through legal proceedings. These legal arrangements grant the caregiver the authority to make decisions on behalf of persons with disabilities. The specific process and requirements vary by jurisdiction, so caregivers should consult with an attorney specializing in elder or disability law for guidance.
Disability Rights Laws
Caregivers should familiarize themselves with disability rights laws, such as the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973. These laws protect individuals with disabilities from discrimination and ensure equal access to healthcare services, facilities, and accommodations. Understanding these rights can help caregivers advocate for appropriate care and accessibility for persons with disabilities.
Related: How does legislation affect mobile health apps?
Striking a balance of privacy rights and ensuring well-being under HIPAA
By obtaining proper authorization, engaging in open communication, and respecting persons with disabilities' privacy rights, caregivers can ensure the individual's autonomy. Adhering to the principles of minimum necessary disclosure and informed consent, caregivers can further provide effective care while protecting the privacy and confidentiality of their health information.
Kirsten Peremore
