Decision Making – Guardianship

In New York, when your child reaches age 18, parents lose the legal right to make decisions for their child. It is important to recognize the role that transition from pediatric to adult medical care and services plays in planning for the life of an individual with special health care needs. At age 17, many parents commence a guardianship proceeding. While not all young adults with medically fragile conditions need a guardian, those who do may benefit significantly from parents applying for guardianship—in ensuring that care and services are delivered as seamlessly as possible, that benefits and coverage are secure, and in many other aspects of life.

The guardian of the individual takes on the decision-making ability for the person with a medically fragile condition or intellectual disability/developmental disability, especially as it relates to elective medical surgery.  A parent can be designated as a child’s guardian and be empowered to continue making decisions without regard to age.

Without being appointed legal guardian, a parent will not be able to make financial and healthcare decisions for his/her child. An exception to guardianship would be if a child has the capacity to execute Advance Directives: Durable Power of Attorney, Health Care Proxy and Living Will.

You can also name a Successor Guardian to you in case you are not available. Often parents will have themselves appointed guardian and name a standby guardian at the same time. Upon the death of the parent/guardian, the standby guardian can immediately assume the role/duties of a guardian.

Surrogate Decision-Making:

Article 81 Guardianships: Being a product of the 1990s, Article 81 reflects more recent thoughts on the abilities and rights of persons with disabilities. Its provisions include the necessity of a diagnosis of the actual abilities of the person with disabilities including how they function on a daily basis. In this way, it is more individualized than its predecessor. Provisions are made for a court evaluator and counsel for the person with disabilities in some cases under Article 81. 

Article 81 provides for “tailored” or “limited” guardianship over the person with disabilities, his or her property, or both. These limitations will be based specifically on the functional abilities of the person with disabilities and will be tailored to those limitations. Thus, under Article 81, each guardianship appointment is unique.

Article 17A Guardianships: Article 17A is usually the quicker and less expensive route to the appointment of a guardian, and provides a court order giving the guardian power over the financial and/or personal care of the person with disabilities. On the other hand, Article 81 provides for individualization of the court order and requires training for the guardian and court evaluators. In addition, Article 81 provides extensive accounting requirements. Under certain conditions, Social Security or conserved SSI funds can be used to pay for the cost of pursuing guardianship.

Details on these topics can be found on pages 45-46 of “Planning for the Future,” in the publications listing of the DDPC’s website