Healthcare Access Details to Sort Out Before a Teen With a Disability Turns 18

Your child reaches the age of 18, and suddenly you’re treated like a stranger in the healthcare system. After one week, you can request a lab test, call your pharmacy, and converse with the specialist’s office. The following week, the portal is empty, and a polite voice replies, “We can’t share that.

There was no change in your teens. They still need you and they still need what you do for them and how you do it, and they still need each other’s needs met. The records system simply switched on.

It’s very common for families of teens with disabilities to be surprised by this and it’s all too easy to get off the path if you begin a year or more before. Here are the things to clear up, in order of easiest to do.

The short answer is that in most states, 18 is the age at which a young person is legally an adult in Nebraska; it is 19. After that, the parents have limited access to medical records and an automatic right to say what is done with the records, unless the young adult requests access, or there is a legal document such as guardianship. The majority of the fix is paperwork and works best when you begin approximately 12 months prior to the birthday.

Tip 1: Find out what flips on the birthday

While your child is a minor, you’re normally treated as their personal representative under HIPAA. This is why you can view records, converse with clinicians, and control prescriptions. That default is over once they’re grown. Your young adult will manage his/her own health information and you will not have access to it without his/her written permission or through a legal relationship (like being a court-appointed guardian or having a named health care agent).

A second layer is added to this with patient portals. Some health systems even limit parent proxy access at 12 or 13 to preserve teen privacy, and many do so at 18. Each system has different policies, so be sure to check with each clinic for a specific answer.

Remember the people who help your teen on a daily basis. If your teen is on home care, the home care provider for children and adults with disabilities may also require your young adult consent to continue to provide updates to you following the birthday. Add them to your list of calls to make along with the doctors.

Here’s one more thing to know: A disability diagnosis does not take away the presumption of an adult’s capacity to make their own medical decisions. Guardianship is one alternative and is not an automatic consequence. 

Tip 2: Start practicing the skills before the paperwork matters

If your teen hasn’t scheduled an appointment or identified a medication, a signed form is of little help. Ordering a refill, rescheduling a visit, saying a diagnosis out loud in one simple sentence: these are skills, and they become easier with practice in small doses – in a low-pressure setting.

For instance, independent living skills in Omaha can be considered in Omaha, which helps the family prepare the young person for independent living by helping to coordinate appointments and handle medications at the youth’s own speed. Whether you’re coaching, or your therapist or caregiver or anyone else is, several months of practice has prepared whatever legal arrangement you’ve implemented to function much more effectively in real life.

The easiest approach is to have your teen make the next phone call and gradually back off a bit at a time. 

Tip 3: Pick the legal arrangement that fits, lightest first

There is a wide spectrum between “parent has complete control” and “teen is on their own. This is a map, not legal advice as rules differs by state.

Mutual access to mutual permission. Your young adult signs a records release and the health system’s adult proxy form. It can be effective when your teen knows what is being shared with them and agrees, and is the least restrictive approach.

A health care Power of Attorney. Your young adult designates a health care agent – someone he or she trusts to communicate with providers and in some cases, make decisions on his or her behalf – if he or she is unable to do so. Your teen must read what they’re signing.

Supported decision-making. In some states, there are formal agreements where trusted people assist an individual to consider his or her choices while making his or her own decision. Ask if it is available, as it may not be in your state.

Guardianship or conservatorship. Someone is designated to act for a court. It is the most limiting choice, and many states will require families to explore other, lighter options before choosing this. It may be the ideal option for some young adults, if it is a pragmatic selection.

Each state has a federally funded PA agency that will guide you through these options, and a special-needs lawyer will prepare the paperwork. Don’t rule them out; both deserve a call before deciding. 

Tip 4: Work backward from the birthday

Takes a loose timeline approach that prevents too much from happening in the last week:

One year prior: Discuss with each specialist and your pediatrician about their transition policy and what happens on the transition birthday. Discuss your teen and a special-needs attorney, if possible, which works best. 6 months prior to: Sign and submit what you have decided on and request adult portal paperwork. 3 months before: Test it. See if you can log in as your teen and as yourself and request a refill. Birthday week – the access will still be there and follow again a month later. 

Tip 5: Check the small portal and pharmacy details

The legal piece is only part of it. These smaller things cause most of the actual lockouts:

• Adult proxy isn’t the same form as child proxy. Typically requires a signature from your young adult, with a possible ID present.
• Ask what the proxy can see. There are systems that exclude clinical notes or behavioral health information even when proxy access is provided.
• Set up your teen’s own login early. Be sure that the two-factor code reaches a phone that your teen has access to and can use.
• Check the pharmacy account. Make sure that the correct names are there to collect and discuss prescriptions.
• Treat insurance as its own track. The insurer member portal and explanation-of-benefits mail are separate from the clinic portal, and benefits like Medicaid and Social Security can be reviewed at 18. Ask the agencies involved in what changes.
• Carry an emergency contact card. In an emergency room, staff talk to the patient first. A card with your name and a copy of the signed documents helps them reach you.

 Tip 6: Plan the move from pediatric to adult care

The doctors change too, so plan that deliberately. Got Transition, the national center for health care transition, lays out six core elements many clinics follow: a transition policy, tracking progress, a readiness assessment, a transition plan, the transfer itself, and a follow-up to confirm it worked. Ask your pediatric clinic whether it uses something similar and request a current medical summary and an emergency care plan to bring to adult providers. Some pediatric practices keep patients past 18, so ask how long yours does.