2005 Teresa Kellerman
What do we need in our
community in order to care for adults with FASD?
There are two very
obvious needs. We need adequate services and we need funding to
provide those services.
But let’s get
reasonable. We cannot just tell our legislators we need programs A,
B, and C, and we need X amount of dollars to fund them.
This is just not going
to happen until we “get over it.” As a society we need to get over
our love affair with alcohol. As responsible consumers we need to
recognize the power that the alcohol industry has over our attitudes and
beliefs and behaviors and the influence this mighty entity has over our
legislators and policymakers and our families.
We as a society need
to remove our blinders of denial about alcohol as a dangerous drug.
We don’t need to be anti-alcohol, we just need to tell the truth about
alcohol. We break down denial by raising awareness about alcohol and
FASD, and not just on September 9th.
We need to talk more about the danger alcohol consumption poses to women
of childbearing age and about the high rate of birth control failure.
Half of all women of childbearing age drink alcohol, and that rate is
increasing year after year. We need to ask ourselves “Why?”
Half of all pregnancies are unplanned, so women are exposing their babies
to alcohol without even knowing they are pregnant. Again, we need to
ask ourselves “Why?” Is the alcohol industry targeting young women?
Are there more young women for whom prevention, education, or treatment is
just not going to be effective? We need to keep asking ourselves
“Why” until we find the core answers.
But let’s jump forward
in time and say that we have the money and the resources to provide
services to adults with FASD. What would that look like?
First of all, for a
group’s needs to be met in the community, the community needs to know
about and understand the group’s needs. If FASD is mostly invisible
and to a great extent misunderstood, then we have to begin by educating
the entire community: government leaders, service providers,
educators, and the general public.
We need to recognize
individuals with FASD at all ages. A diagnosis would be ideal;
documentation would be helpful. But this is seldom going to be the
case. So we should do what we can to verify suspicions of possible
We would identify
adults using assessments, such as a good psychological evaluation, or a
questionnaire or checklist, or maybe a functional assessment like the
Vineland, or perhaps just a thorough journal by the parent or caregiver.
Based on the data collected, we would put together a good needs
assessment, an individual personal plan.
Then we would educate
everyone in that person’s life: the team, the family, and the individual
himself or herself, about that person’s specific disability, how FASD
affects his or her ability to function in life. An important
component of educating the family and the individual would include
guidance through the grief process to accept the reality of FASD, to let
go of the dream, and to find a new dream toward which to work.
Then, and only then,
can we begin to provide quality services. That means providing the
individual with an “external brain” as noted by Drs. Sterling Clarren and
Susan Doctor. That external brain will look different for each
individual, based on their unique needs. It might look like 24/7
supervision, or daily mentoring. How much guidance is given will
depend on the individual’s past record, their present level of
functioning, and the future risk of serious secondary disabilities based
on reasonable expectations.
We will set reasonable
goals for the individual, based on this priority: Safety first, then
health, and then freedom. We will resist the temptation (peer
pressure) to give the adult with FASD (who may have the functional ability
of a 6 year old) the same independence we give to nondisabled adults.
Giving them too much freedom puts them at serious risk of becoming
arrested, addicted, injured, or killed. Then they will have no
freedom. If we protect their right to a safe environment and a
healthy lifestyle, we maximize their chances to have a relatively high
level of freedom.
So it boils down to
providing the individual with the “external brain” as determined by sound
assessments to allow the person the best chance to live a quality of life
that encourages them to find their dreams and attain success.