© 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 FASD.
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.
Being a compulsive acronym seeker, I found a way to put all of this into bullets that spell out a word that we need to remember: REASONABLE. We need to be reasonable in our expectations of individuals with FASD, of their families, and of the professionals who are entrusted with providing what they need.
R is for Remove invisible barriers, such as denial, stigma, blame.
E is for Educate everyone at all levels about FASD, especially one-on-one.
A is for Assessments, such as IQ, Vineland, questionnaire, journal.
S is for Service plan based on individual needs and talents.
O is for Objectives that set the person up for success.
N is for New definition of “success” and new dream for the future.
A is for Acceptance by everyone of the reality of FASD disabilities.
B is for Build a Circle of Support around the individual.
L is for Life-long plan for sustaining that support.
E is for Everyone is responsible for FASD, it’s prevention and intervention.
I believe that one of these bullets is more important than all the others: Acceptance - especially acceptance by the person with FASD. If everything else is in place, but the individual cannot accept the reality of their disability, they will resist all reasonable attempts to help put a stable support system in place. Educate everyone, but most importantly, educate the individual with FASD first and foremost.
FAS Community Resource Center