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| Photo by Jude Beck on Unsplash |
By Susan Moffitt
Your ASD child is turning 18 and will technically be an adult. If you
feel that your child will be incapable of making adult decisions on
their own behalf, you can pursue a legal guardianship so that you will
retain the rights to make those decisions for them. A guardianship ends
or severely limits your child’s rights and freedoms. State laws require
that less restrictive alternatives are explored before guardianship is
ordered.
Autism Speaks’
website explains:
“Adult guardianship is a court proceeding to appoint an
individual to make decisions about a person’s health, safety, support,
care, and place of residence. The procedure for obtaining a guardianship
varies from state-to-state, but generally the process is initiated by
an interested party filing a Petition with the court that states
probable cause as to why a guardianship is necessary. The proposed ward
and other interested parties – such as the proposed ward’s spouse,
children and relatives – will receive a copy of the Petition, and the
court will appoint an independent evaluator to assess the ward and make a
written recommendation about the ward’s capacity. A hearing is held
after the completion of the evaluation where the court will make a
determination regarding the necessity of a guardianship. The ward has a
right to hire counsel to represent him or her or the court will provide
counsel.”
Once a guardian is appointed, the court may limit or terminate the
ward’s right to consent to medical treatment, establish a residence,
change domicile or vote. A guardian of the person may exercise most of
the ward’s personal rights with the exception of the right to vote. The
guardian must make decisions that are always in the ward’s best
interests, cooperate with the conservator, if any, and encourage the
ward’s participation in personal decisions so he or she may become more
independent and regain the ability to manage his or her own personal
affairs. The guardian must also file an annual report with the court to
advise of the ward’s personal status.
Guardianship rules vary a great deal from state to state. The length
of the hearing process also varies. Some states take away almost all of a
disabled person’s rights while others allow them to retain some of
them. Florida, for example, has Guardianship Advocacy which is similar
to Guardianship but doesn’t require a capacity hearing.
Most states have passed a law called the Uniform Adult Guardianship
and Protective Proceedings Jurisdiction Act (UAGPPJA). Florida, Kansas,
Texas and Michigan prove the exception. This law makes it easier for the
state to transfer guardianship from one state to another if the person
moves.
A Power of Attorney is an alternative to Guardianship that allows a
disabled person to choose a person to make critical decisions concerning
finances or health care for them. Unlike guardianships, Power of
Attorney can be canceled at any time.
There is also the Representative or Protective Payee who is appointed to manage benefits such as Social Security.
Financial options also exist to assist your disabled child through life as well:
ABLE Account – If your child became disabled before
they turned 26, an Achieving a Better Life Experience (ABLE) account can
be setup. An ABLE account allows for up to $15,000 per year to be
deposited into a tax-free savings account without affecting eligibility
for government awarded benefits. While it can be easy to setup, the
account can’t hold more than $100,000 and there are other hidden
pitfalls that should be carefully considered before selecting this as an
option.
Special Needs Trusts – A Special Needs Trust also
called a supplemental needs trust allows for your special needs child
(before or after they turn 18) to receive gifts, an inheritance, or
other funds to provide supplemental care, life-enhancing services and
equipment beyond that what the government provides. The Trust directs
the funds so that the funds are not considered to belong to your child
when they apply for government programs, such as Medicaid and Social
Security Income (SSI). The 3 main types of Special Needs Trusts include
first-party special needs trust, third-party special needs trust, and
pooled trust. For more information
click here.
Life Insurance – If you don’t have funds to put into
an ABLE Account or a Special Needs Trust, life insurance is an option
to consider. If you do establish a Special Needs Trust for your child,
the life insurance policy can be directed to payout to the Trust without
being subject to estate taxes or probate. It is important to make sure
you choose a life insurance plan that provides your child the same
quality of care for the remainder of his or her life.
* * *
Guardianship is an emotionally charged issue that requires soul
searching. Parents want what’s best for their adult ASD child. They want
them to be protected, yet given space to grow and become more self
sufficient.
But issues arise. The special needs individual may not want a
guardian. An individual facing a guardianship petition has the right to
an attorney and under some state laws, that attorney must advocate for
their “best interests” as determined by a court-appointed guardian ad
litem or GAL (A GAL is an individual appointed by the court to represent
the best interests of a child or incapacitated person involved in a
case in superior court). If the client of the GAL disagrees, their legal
representative is essentially fighting for them to lose their case.
ASAN or the Autistic Self Advocacy Network strongly
believes it is wrong
to “subject guardianship” upon a special needs individual. They believe
everyone should have the ability to make their own decisions. They
point out that neurotypical people rely upon the input and feedback of
others when making decisions in their lives, and they should be able to
as well. A movement called Supportive Decision-Making is gathering force
across the nation.
It began in 2013 with a young woman with Down’s Syndrome named
Jenny Hatch.
Jenny was a high school graduate, worked at a thrift store she loved
and volunteered in political campaigns. At her parents’ request, a court
put her in temporary guardianship, placing her in a group home where
they took away her cell phone and laptop and wouldn’t let her return to
work or socialize with friends. Her parents filed for permanent
guardianship, wanting her to remain in the group home that they felt was
the safest environment for her.
After a year of litigation she won the right to make her own
decisions through Supported Decision-Making, a process in which a team
of allies help the disabled person to make key decisions about their
life. She became a national and international hero for the rights of the
disabled and speaks publicly of her experiences. A growing number of
states now have Supported Decision-Making laws to give the disabled
maximum freedom while retaining a network of support for them throughout
their lives.
You can find the states that have Supported Decision-making laws at:
www.supporteddecisionmaking.org/50_state_review
There’s a wealth of information to consider and assimilate as a
parent facing the prospect of your ASD child becoming an adult. You’ll
want to review the laws of your state, weigh your options and seek legal
advice. Each ASD person has their own constellation of strengths and
challenges and it is understood that every parent wants the best for
their child. None of us has a crystal ball into the future, but if we
did, we would want to see our adult child living their best life
possible. In this spirit, we take the hard steps to blaze a trail
forward for them.
Full Article & Source:
Guardianship and Autism: A Crossroads in Life
