BY Ed Zetlin & Mark Friese
rofessionals often advise parents about
the need for Guardianship when their
child turns 18. Before the age of 18 par-
ents are the “natural” guardians of their chil-
dren, but upon reaching 18, children are legally
emancipated and now adults. With the advent
of HIPAA regulations, doctors, hospitals, health
professionals, and government agencies require
either consent from the 18-year-old or a guard-
ianship order as a prerequisite to providing any
information to third parties (the parents) about
their disabled son or daughter.
But parents and the disabled son or daugh-
ter rightly have questions about the need for
Guardianship and the process to obtain Guard-
ianship. Guardianship is a court determination.
The court determines whether 1. the alleged
incapacitated person meets the statutory re-
quirements for incapacity and 2. whether the
proposed Guardian(s) are appropriate and will
fulfill the duties of a Guardian.
Disability does not equal incapacity. An autistic
adult may need assistance in some aspects of
their life, but that does not mean a Guardian is
required. The advent of “assisted decision mak-
ing” is an attempt to find a new approach rather
than summarily obtain a Guardian. Assisted de-
cision making probably deserves its own article.
If you and your spouse were to divorce to-
morrow, would you be able to financially
care for your autistic child on your own—
perhaps for your child’s lifetime?
One rule of thumb to think about is to imagine
whether a physician would accept “informed
consent” from the disabled person if a medi-
cal procedure is needed. Can the person un-
derstand the risks and benefits of a medical
procedure and convey that understanding and
approval or disapproval to the proposed proce-
All states are different in their Guardianship
laws. There are different definitions of “inca-
pacity,” different procedural rules and differ-
ent rules as to who represents or speaks for the
disabled person. We can make some generaliza-
tions for all jurisdictions.
4. A hearing is held to appoint the Guardian.
Co-guardians are allowed in all jurisdictions.
5. The Guardian has a continuous duty to re-
port to the court or some agency as to the
welfare and living conditions of the incapaci-
Generally, these are not difficult cases. How-
ever, Guardianship should not be taken lightly.
Guardianship is a significant loss of rights. It is
best viewed as a means for assuring protection
and the welfare for the incapacitated person if
no other substitute decision-making process is
1. Some form of recent medical/psychiatric/
functional evaluation of the person is required.
2. A petition/complaint laying out the need for
Guardianship and the proposed Guardian is
3. The court always appoints a third person,
usually a lawyer, as a court investigator or
guardian ad litem to make an independent
evaluation of the need for Guardianship and
the fitness of the proposed Guardian(s).
Edward Zetlin has a solo practice in the areas of elder &
disability law, guardianship/conservatorship, public benefits,
estate planning and estate administration. He serves on the
Northern Virginia Autism Association Board and is an
Adjunct Professor of Law at the Washington College of
Law of American University.
Mark Friese is the founder of Special Needs Financial Advisors,
based in Washington, D.C. With over 100 years of combined
experience, they help to navigate the many aspects of planning
with special needs family members.
WE NEED YOUR HELP!
SB923 Conner’s Law passed in VA. Join our
advocacy movement while we
go state by state, changing laws as needed...
Because a disability doesn’t stop
on a child’s 18th birthday.
Conquer for Conner
ZOOM Autism through Many Lenses
ZOOM Autism through Many Lenses