Now & Later
Planning for adolescents with special needs.
by Brian Finn
TWEENS & TEENS News September
2007
How much makeup is too much? If everyone else
is allowed to go to the latest PG-13 movie,
should your parents give in and let you go?
How late is too late for bedtime? Is the skirt
too skimpy, the look too scruffy, the hair too
long, short or odd? And if something happens
to your parents, who will take charge of lifestyle
and medical decisions for you?
If you’re a tween or teen, most of these
questions probably sound familiar— part
the daily litany of arguments that any adolescent
tends to have with his or her parents. But the
last question resonates mostly with kids with
special needs and their parents. In most cases,
parents of special needs children have been
making difficult decisions on behalf of their
kids since birth, and such parents should be
particularly aware of the need to safeguard
their kids’ financial futures.
What these parents may have forgotten, however,
is that they have an adolescent on their hands.
In many ways, that fact needs to be added into
the equation of how parents reach rational,
reasonable decisions, which you, their tween
or teen, may want to have a voice in making.
Parents need to think through their options
carefully and make planning for the future a
priority. Even if parents already have a plan
in place, the adolescent years present a good
time to reassess the plan and make any necessary
adjustments.
Know the Facts
The U.S. Census Bureau estimates that more
than one in ten Americans between the ages
of 16 and 64 has some form of physical, mental
or emotional impairment. One in nine children
under age 18 participates in special education.
While many are born with special needs, others
are stricken later in life. For example, 1.5
million people suffer a traumatic brain injury
annually, according to the national Centers
for Disease Control and Prevention.
Special needs can range from the obvious—
kids with wheelchairs or respirators, to the
more subtle— those with dyslexia, autism
or bipolar disorder. A 2005 online survey
of parents whose children have special needs
indicated that special needs children typically
have more than one type of impairment. While
only 23 percent of the participants said their
children have physical impairments, close
to half (48 percent) cited developmental issues
and the same percentage indicated emotional
issues. Thirty-two percent mentioned cognitive
impairments and 30 percent said there were
special medical needs.
The same online survey indicated that 60 percent
of parents do not expect their child with
special needs to ever be financially independent.
The questions such parents face are critical
and the choices daunting, such as: What happens
to my child when he or she turns 18 and is
a legal adult, but incapable of making appropriate
decisions? What happens when my child outlives
my spouse and I, but cannot live independently?
Steps to Consider
The following are some measures that parents
of tweens and teens with special needs should
consider.
•Let capable teens have a mind of their
own. Some kids may have cognitive disabilities
that leave them in a toddler state of mind
forever. But for others whose challenges are
physical or emotional, you need to remember
that teenagers are old enough to have opinions—
and usually strong-willed enough to express
them. Before making decisions about guardians
or living arrangements, discuss them with
your 12 to 18 year olds. Listen to what they
say, and reach decisions mutually.
•Know the laws. It’s important
to remember that the law recognizes your child
as an adult when he or she turns 18, regardless
of cognitive ability. Think ahead: You should
determine if it is necessary or desirable
to pursue a court order that allows you to
continue to make decisions on your child’s
behalf. Should you seek a limited or full
guardianship? If you named a guardian in your
will, that provision is no longer valid when
your child turns 18. Do you want that person
apply for guardianship through the court?
Bottom line— the plans you put in place
when your child is young may not survive the
transition to your adolescent’s adulthood,
so it’s time to rethink your choices.
•Prepare for transitions. The teenage
years are a critical time for transition planning.
The Individuals with Disabilities Education
Act (IDEA) covers your child’s educational
needs until the age of 22. IDEA is intended
to provide a safety net for your child’s
public education, job training and socialization
needs. But what happens next? College? A job?
Communal or independent living? Be sure to
take advantage of the planning resources provided
under the federal law for as long as possible.
•Take care of business. Will your child
have the resources needed if something happens
to you? Have you set up those resources so
that federal assistance for which your child
may be eligible does not inadvertently cease?
(There are many types of special needs trusts.
You want to make sure you’ve put the
right one in place— one that complies
with laws in your state and addresses your
child’s condition.)
In addition, have you written a letter of
intent that documents your wishes, as well
as provides details about the life and habits
of your tween or teen? From day one, your
child with special needs has depended on you
to make the right decisions. It’s up
to you to make sure that you don’t let
your child down after you are gone.
All parents worry about the future when they
look at their kids and recognize how soon
they will cross the threshold of adulthood.
For the parents of kids with special needs,
these worries need to translate into action.
Fortunately, there are resources available
to provide guidance. Along with following
the steps above, you can seek guidance from
many experts in the non-profit sector.
The future is full of promise for all kids,
despite what might be perceived as certain
children’s limitations. A parent’s
role is to ensure their child’s future
is protected through careful planning. Once
those plans are in place, plenty of time remains
to worry about other pressing adolescent issues,
including cosmetics, curfews and clothes.
Having three children with special needs,
Brian Finn has a unique perspective on the
challenges that other families with similar
needs encounter. Finn is the director of MetDESK,
MetLife’s Division of Estate Planning
for Special Kids (www.metlife.com/desk). MetDESK
focuses on the financial concerns of families
who have children and other dependents with
special needs.
