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Ask Dr. Sue
DEVELOPMENTALLY DELAYED TEENS IN
TRANSITION
Dear Dr. Sue,
My niece is developmentally delayed. She is 13
years old and lives at home with her mother. (She
is an only child and her mother is a single Mom.)
Her mother plans for this girl to just live with her
permanently and to provide for all of her needs (food,
clothing, etc.), even though my niece is very capable of
eventually holding a simple job and living away from her
mother with some help. I’ve argued with my sister
that she is depriving her child of things that she
should be involved in (she spends all of her time at
home). I’m also very worried about what will
happen when the day comes that my sister isn’t around
and my niece is suddenly faced with having to be a
developmentally delayed adult with no preparation.
What would you recommend?
Concerned Aunt
Dear Aunt,
You mentioned that your sister wants to provide for all
of her child’s needs at home, but unfortunately there
are some needs that we as parents can’t provide in the
safety of our own homes. Developmentally disabled teens,
like other teens, have a need for social interaction and
for independence, to the degree that they are capable.
They also have a need for the feeling of satisfaction
that comes with contributing to the world or community
in some way (by performing some type of meaningful work,
whether they get paid for it or not).
There is a great deal that your sister can be doing now
to prepare her daughter to transition into the adult
world, and it is really a responsibility that she should
not ignore. Perhaps you can convince her to call
one of the local agencies that deal with developmentally
delayed adults for their input and information about
their available services.
I’ll reproduce here a summary of some of the actions
that should be taken as a developmentally disabled child
reaches their teen years. (This information comes
from the excellent Washington State Adolescent
Transition Resource Notebook "Working Together for
Successful Transition," September 2003 revised 2006).
• 4-5
years before High School Graduation:
-
Have conversations about career
goals, and obtain information about careers that
your child is interested in.
-
If those goals involve schooling
after high school, investigate those options, and
what their admission requirements might be.
Don’t rule out a certain career out of hand due to
the teen’s disabilities; there might be some aspect
of the career that your child can handle due to her
ABILITIES and in spite of her disabilities.
-
Begin to visualize and talk about
what a possible living situation outside the home
might look like. Would a group home be
necessary? Might she thrive in a small
apartment as long as her mother and perhaps people
from other agencies were involved on a frequent
basis?
-
Work on the child’s communication
skills, so that your teen can express her desires
and needs, ask for help when needed, and explain her
disability to others.
• 2-3
years before graduation:
-
Get involved with community resources
for Vocational Rehabilitation and other services.
Explore all that you can find until you are very
familiar with the services available.
-
Have your child take college entrance
exams if her dreams include some college work.
(Talk to her school counselor and review this
possibility during her IEP conferences.)
-
Talk to her doctor about the
possibility of sexual activity and about birth
control.
-
Practice communication skills that
might be needed for a job and for social settings.
(Remember to talk to her about sex in a way that she
can understand, and help her learn to protect her
body by being able to say "no," like you would any
other teen girl.)
-
Look into guardianship.
-
Practice skills of living, including
hygiene (self-managed), budgeting, meal planning,
and house cleaning. Remember to give your
child increasing responsibility as she masters one
level of care. Don’t assume she isn’t capable
of a certain level of responsibility until you’ve
tried that level, and keep working toward greater
mastery.
• 1
year before high school graduation
-
Decide on what further education she
needs and can qualify for in order to be able to
make a living. Apply to the institution, if
appropriate, and arrange for a living situation
during this training, if necessary.
-
Alternatively, help her decide on a
local job, practice interviewing techniques with
her, and then have her call to set up the interview.
-
Hand over the responsibility for
getting up on time and getting out the door on time
to her. This is a skill she will need for the rest
of her life.
-
Also hand over the responsibility for
making and keeping appointments with the doctor,
filling prescriptions and taking prescribed
medications. She should also manage her other
appointments whether with the hairdresser, the
dentist, the optometrist or social service agencies.
-
Let her take over making sure that
she has needed supplies, whether that is feminine
hygiene supplies, school supplies or dish detergent.
-
Go with her to register to vote.
(Boys need to register for the draft, as well.)
Of course, at each of these steps, your
child may need minor guidance to major assistance.
Your child may not be capable of some of these steps
(but try them, before you assume that.) Your child
may need a large desk calendar with reminders written on
it for most responsibilities. Some may need
pictures instead of words on their calendar.
Whatever it takes, every developmentally disabled child,
just like every other child, has the right and the need
to grow and perform to the best of their abilities.
As the introduction to the Washington State Adolescent
Transition Resource Notebook states, "...skills needed
for a successful journey include: a sense of knowing
one’s strengths; the ability to ask for help when
needed; the option to live as independently as possible;
the chance to participate in the community as fully as
possible; and the opportunity to find satisfaction in
work and in life-long learning." No one can say it
better than that.
The Washington State Adolescent Transition Resource
Notebook can be downloaded, or obtained as a CD or hard
copy. The easiest way to find it is to do a search
for "Adolescent Transition Project". You will find
a wealth of information as well as access to the entire
notebook. If your sister is not interested in
obtaining this notebook, you could download it for her
and give it to your niece as a gift. (Her mother
would surely get interested then.) It might be the
best gift you ever gave.
 
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