Photo of Young Child Working on an iPad

Raising a disabled child is not easy. That goes without saying. And what can make it more frustrating is when you no longer have access to your child's medical and financial records once she turns 18. Why is this the case?

We are All Presumed to be Competent at 18

Well the answer is quite simple. When anyone turns 18, they are no longer considered a “minor” and are now an adult in the eyes of the law. That's true of someone who has a cognitive disability as well, regardless of how impaired that person may be. In other words, anyone who turns 18 is presumed to be competent. Therefore, as a "presumed" competent adult, your child now must give consent for you to have access to his medical records, just as any other adult would have to give consent.  That, of course, begs the question of whether your child has the mental capacity to give consent.  Some do, some don't.

Since we are all presumed competent, the only way to change that legal status is to have a court of law (a Judge) declare the person incapacitated. It may be an obvious declaration, but the declaration needs to be done through the court system in all cases.

There is a Range of Incapacity

In some cases, it may be obvious and apparent that your child is incapacitated and lacks the ability to give consent to allow you or a sibling access to her medical records.  However, with some disabilities, like Down syndrome or autism where there is a spectrum of cognitive impairment, the degree of incapacity may be debatable. In such cases, you may want to consider a limited guardianship or what is known as a conservatorship, depending on your child's ability to understand and comprehend aspects of their life and affairs. Part of the “limited” guardianship might be the authority to access your child's medical records and have direct dialogue with the doctors.

A Power of Attorney or Living Will Might be an Option

Keep in mind too that if your child is higher functioning, they may have the capacity to sign a Power of Attorney or Health Care Directive (Living Will) in which they appoint you (the parent let's say) as their surrogate. That might avoid all together the need to file for guardianship, full or limited. Such an approach, if indicated, would also be the least restrictive approach in terms of establishing a surrogate relationship between you and your child, which is what the law requires.  Guardianship should always be viewed as a remedy of last resort.

Protection v. Autonomy - - A Delicate Balance

So … do you need to file for guardianship automatically when your disabled child turns 18?  Not necessarily, and even if you do, there are ways to approach that process that affords you the authority needed to protect your child, while at the same time maximizes your child's autonomy and rights as an individual.  Protection versus autonomy - - a delicate balance for sure and one that all parents of disabled children struggle with to get right.