Health Care Proxy for a Disabled Adult in Rhode Island

At 18, Your Child's Doctor Stops Talking to You

This blindsides families. Under HIPAA, the moment your child turns 18, healthcare providers cannot share medical records, discuss diagnoses, or involve you in treatment decisions without your child's explicit written authorization — regardless of their disability.

You've been managing medications, coordinating specialists, and attending every appointment for 18 years. Then overnight, legally, you're a stranger.

Three Documents That Solve This

You don't need guardianship to stay involved in your adult child's medical care. Rhode Island offers three medical decision-making tools, and families may use one or more of them.

1. HIPAA Release (Information Access Only)

A standard HIPAA authorization form, signed by your adult child, directs specific providers to share medical records and discuss treatment with you. This is the simplest tool — it gives you access to information without giving you decision-making authority.

Every provider has their own HIPAA release form. You'll need to sign one at each doctor's office, hospital system, pharmacy, and therapy provider. It's repetitive but straightforward.

The limitation: a HIPAA release lets you see records and join conversations. It does not authorize you to consent to surgery, refuse treatment, or make decisions during a medical crisis. For that, you need the next document.

2. Healthcare Power of Attorney (Durable)

Under R.I. Gen. Laws § 23-4.10-2, your adult child appoints you as their health care agent with authority to make medical decisions when they cannot give informed consent for the particular decision. This is sometimes called a "health care proxy" in Rhode Island.

The form must be signed by your child and witnessed by two qualified adults or notarized. It operates when your child cannot give informed consent for the particular decision: if your child can express a preference about their own care, they retain that right. The document is a backup, not a takeover.

What it covers once activated:

• Consent to or refusal of medical procedures
• Access to medical records and consent to their disclosure
• Decisions about treatment plans, medications, and therapies
• End-of-life decisions if your child's wishes aren't otherwise documented
• Authority to communicate with any provider on your child's behalf

3. Supported Decision-Making Agreement (Ongoing Medical Support)

An SDM agreement under Rhode Island's 2019 Act designates you as a supporter who helps your child understand medical information, weigh treatment options, and communicate preferences to providers. Unlike the healthcare POA, the SDM agreement is active all the time — your child remains the decision-maker, and you're the translator and advocate.

This fills the gap between "I can read the records" (HIPAA release) and "I make decisions during emergencies" (healthcare POA). Day-to-day, your child directs their own care with your help explaining what the doctor said and what the options mean.

Which Combination Do You Need?

Your child understands medical decisions with support: HIPAA releases at each provider + SDM agreement. The SDM ensures you can attend appointments, ask questions, and help your child decide. The HIPAA release guarantees record access.

Your child understands routine care but struggles with complex medical decisions: All three. The SDM and HIPAA handle everyday appointments. The healthcare POA activates during emergencies, surgeries, or situations where your child is unable to participate.

Your child cannot express medical preferences or understand treatment options: A healthcare POA alone won't cover ongoing care needs because it operates only when your child cannot give informed consent for the particular decision. If your child lacks capacity for routine decisions — not just crisis decisions — you're likely looking at limited guardianship over medical decisions through the probate court.

Execution Details That Matter

HIPAA release: Your child signs the provider's form. No notary required, no witnesses. Can be revoked at any time. Must specify which information and which recipients are authorized.

Healthcare POA: Signed by your child plus two qualified adult witnesses or a notary. The witnesses cannot be the appointed health care agent. Keep the original — providers may ask for it during an emergency, and a copy may not be accepted at every facility.

SDM agreement: Signed by your child and all named supporters before a notary or two witnesses. The witnesses can't be supporters named in the agreement, employees of supporters, paid service providers to your child, or people who do not understand the principal's communication unless an interpreter is present.

The Provider Education Problem

Having the documents isn't always enough. Some providers — particularly front-desk staff and hospital intake teams — aren't familiar with Supported Decision-Making agreements. Rhode Island law recognizes decisions and requests communicated with a supporter's assistance as the principal's, and permits a supporter to help obtain information the principal is entitled to; a signed, dated specific consent is required for protected health or educational records.

Bring a clean copy of the SDM agreement to every appointment, along with any signed, dated specific consent for protected records. Sections 42-66.13-7 and -8 address recognition of supported decisions and access to information; if a provider refuses to recognize the agreement, escalate to a patient advocate or administrator.

The Rhode Island Adult Guardianship & Alternatives Guide includes templates for organizing your medical documents and a provider communication sheet you can hand to new offices when establishing care.

See more Rhode Island guides →