What happens to parents’ rights when their special needs child turns 18?

Reaching the age of majority—eighteen– is a milestone in New York. That means that all children – – including all those with intellectual or developmental disabilities – – are considered adults with the legal authority to make their own medical, financial and other decisions. The unquestioned decision-making rights their parents have exercised since birth are extinguished with those 18th birthday candles—unless a guardianship is in place.

Imagine a medical emergency and not being able to get any information– much less make any decisions– regarding your young adult child’s medical care. This would be upsetting for parents of neurotypical kids who, though inexperienced, could advocate for themselves or give permission for doctors to talk to their parents. But it can be the worst nightmare for special needs parents whose children’s disabilities would likely prevent them from advocating for themselves, giving consent for doctors to talk to their parents, or even communicating at all.

That’s why it’s important to consult with an experienced New York special needs planning attorney prior to your child turning 18–to get legal guardianship or alternative legal supports in place– so your right to continue making decisions on behalf of your special needs child is guaranteed.

What is a 17A Guardianship?

In a 17A Guardianship, a parent, adult sibling, or other interested party petitions the Surrogate’s Court to be appointed as the guardian of the person, the property, or the person and property, of the intellectually- or developmentally-disabled person. In a nutshell, guardianship of the person covers medical decisions while guardianship of the property covers financial matters. In most cases, the guardianship allows parents to indefinitely continue the medical and/or financial decision-making they’ve been doing since birth.

How does a 17A Guardianship proceeding work?

An attorney with special needs planning experience can handle your 17A Guardianship proceeding, which is ideally filed when the child is 17 so there should be no lapse in decision-making authority when they turn 18. In addition to the petition, affidavits, consents, waivers, and other legal documents that need to be submitted to the Surrogate’s Court, the 17A Guardianship proceeding requires medical documentation in support from one physician and one psychologist, or from two physicians, and often a copy of an IEP or I SP, plus any other relevant documentation requested by the Court on a case-by-case basis.

In addition to the Petitioner (who is the proposed Guardian), Standby, First and/or Second Alternate Guardians can be added as backups. That can be a tough decision, especially if you don’t have people in mind to ask. Move forward anyway. Background checks, including fingerprinting, will be required of all potential Guardians.

A 17A Guardianship is the most restrictive option in that it takes away all of the disabled adult’s decision-making rights.

Alternative options to 17A Guardianship

Advance Directives:

Despite the popularity of a 17A Guardianship, there are alternatives which may be appropriate in cases where the disabled individual is capable of some decision-making. In that instance, advance directives—such as a power of attorney and/or healthcare proxy– may be a better option.

A healthcare proxy is a legal document a person can sign that appoints someone they trust to make medical/healthcare decisions on their behalf. A power of attorney is a legal document a person can sign that appoints someone they trust to make financial decisions on their behalf. It is important to note that the person with the intellectual or developmental disability must have the mental capacity to understand the purpose and effect of the advance directives and must be 18 or older to execute them.

So, for those disabled adults who may be higher functioning, hold a job, or be more independent but still need someone to make their important financial and/or healthcare decisions, a power of attorney and/or healthcare proxy may be appropriate.

Supported Decision-Making Agreements “SDMA”:

After a six-year pilot program, New York Governor Kathy Hochul signed the New York Supported Decision-Making Agreement Act into law on July 26, 2022. This ground-breaking legislation supports the civil rights of those with intellectual and developmental disabilities by “embracing supported decision-making as an alternative to guardianship and preventing discrimination against decisions made by people with intellectual and developmental disabilities”.

Unlike a 17A Guardianship or advance directives–which take decision-making authority away from the intellectually- or developmentally-disabled person–supported decision-making agreements empower the disabled person to designate a team of trusted supporters to help them understand all of their options in various important life situations so they can then make their own informed decisions. For example, they may choose their father for financial issues, their mother for health issues, a sibling for relationship issues, and others to be their supporters.

The New York State Office for Persons with Developmental Disabilities (“OPWDD”) –which drafted and advocated for the SDMA bill– will now move to define the legal procedure of reaching SDMAs, including “describing the settings in which the individual desires support, the kinds of support they want from each trusted person, and how they want to receive that support”. Also important, the new law will need to “create obligations and corresponding immunity from liability for third parties to honor and effectuate supportive decisions made using a supportive decision-making agreement”.  This legislation—signed into law on the 32nd anniversary of the signing of the Americans with Disabilities Act—is an important new legal decision-making option for disabled individuals and their loved ones.

MUST HAVE PLANNING: Choosing and timely implementing the right guardianship, advance directives, or supported decision-making agreements for your disabled loved one is crucial to ensuring that you (and they to the extent they are capable) can make important life decisions after they turn eighteen. Equally important is having a comprehensive special needs estate plan in place. Failure to do so often results in the disabled person losing their government benefits.

For more information, download our FREE report of 10 Must Have Documents for All Parents of Special Needs Children.

At Sverdlov Law, we are dedicated to helping our clients get the peace of mind that comes with getting their affairs in order, preserving their assets, and protecting their families. From our office on Wall Street, we represent clients throughout New York City and New York State in all aspects of estate planning, estate administration, Medicaid planning, elder law, and business succession matters.

Contact us to book your estate planning strategy session today or for additional resources regarding guardianship, advance directives, and supported decision-making agreements.