September 9, 2008
A Diagnostic Protocol for ARND
Jocie DeVries
Reprinted from FAS Times, Spring 2008
According to the weather bureau, the community of Everett, WA is the convergence zone of the Pacific Northwest because the sky over that city is where the various weather systems merge after blowing in from the Pacific Ocean and moving up, around and over the Olympia Mountains. After the September consult on FASD and co-occurring disorders, I will never quite listen to the weather report in the same way because the Convergence Zone was exactly the process we experienced listening to 24 hours of workshops from the state of the field of FASD.
I felt a little sad for the speakers who had to come and go so quickly and couldn’t stay for the whole process because they would have loved to hear the sum total of the outcome. It was so full of hope. In this process we heard from the people in the state of Washington who have been–in our experience–the most sensitive to the needs of affected individuals and their families. The take home value for families is that the neurological brain damage of prenatal alcohol exposure can now be medically documented in everybody from newborns through adults.
Doctors Ann Streissguth, Fred Bookstein and Paul Connor from the Fetal Alcohol and Drug Unit (FADU) at the University of Washington shared the culmination of their behavioral research. We learned about the new science of detecting affected adults through MRI imaging of the corpus callosum and we learned that newborn babies who have corpus callosum damage can be identified through ultrasound images of the fontanel. These remarkable discoveries provide concrete evidence of brain structure abnormalities and are critical to psychiatrists and neuropsychologists who have the job of trying to professionally separate those individuals who “only” have mental health conditions like Bipolar, ADHD or Post Traumatic Stress from those who have structural brain damage, developmental disabilities or some combination of these conditions. The Collective Family Experience that we provide, helps the family sort and sift through the child’s family history and behavioral and medical records as a basis to provide advocacy, mentoring or referral, as needed.
Since the consult I have interviewed Kay Kelly, Director of the Legal Issue Resource Center at FADU. Kay works closely with the four specialists who have developed a forensic assessment team (FASD Experts) to diagnose FASD conditions in individuals who are legally involved in serious capital offenses. After the initial intake, Dr. Natalie Novick Brown begins a sequential 4-step diagnostic process that involves an extensive functional and behavioral assessment of the client’s history, including analysis of the extent of prenatal alcohol exposure (Step 1). Some tests (e.g., for adaptive skills) and collateral interviews are also conducted. If the results indicate problems due to fetal alcohol damage, Dr. Brown refers the client to Dr. Paul Connor for neuropsychological testing (Step 2). If his results also indicate the likelihood of FASD, all data are provided to Dr. Richard Adler, the team’s psychiatrist, who does a physical exam of facial abnormalities and growth deficiency.
After reviewing all data, including reports from Drs. Brown and Connor, Dr. Adler renders a diagnosis (Step 3). If the diagnosis involves FASD, Dr. Fred Bookstein conducts a computerized statistical analysis of the client’s corpus callosum. (Step 4). If damage is found, a case can be made for FASD as a primary factor in the client’s criminal behavior. Once the entire process is complete, the team testifies about their findings in court. FASD Experts is the only known diagnostic team in the world that specializes in forensic assessment of FASD within the legal context and one of the few assessment teams that specialize in adolescents and adults with FASD.
According to the Collective Family Experience, this type of process* is the most efficient and cost effective method to diagnose both FAS and ARND that there is to date. The convergence of this body of information gathered at the 2007 consult is a state of the field that is hopeful and helpful to families.
* For similar diagnostic criteria and protocol, see FAS Times, Spring 2005, p. 9, or the Appendix of our photo book, Nurture: The Essence of Intervention for Individuals with FAS for a review of an article published by Dr. Eugene Hoyme and his diagnostic research team.
Preparedness: Advocacy Tips from the Experts
Victoria McKinney
Excerpted from FAS Times, Winter 2003/2004, Discovering Survival Skills
On several occasions we have gathered parents and professionals together for the purpose of learning from each other by sharing the most positive and effective ways of working and living with FAS/E. The following is an outline (a small sample) of the last 12 years of conversations, retreats and meetings with the most tenacious, determined and wonderful parents and professionals I have ever had the pleasure to call my friends.
For me the best advice I ever received, came years ago from a wonderful elderly advocate with a disabled child. She said, “Dear, don’t you ever let anyone tell you NO. You just walk away with a smile on your face and consider them a dead body. Step over the dead bodies and go on.”
I have learned so much from others on the front lines, I think it is time to share a few highlights for effective advocacy. But they only scratch the surface. Please share what you know about getting services in the following system(s) and we will all benefit.
EDUCATION (This is the largest area of complaints from families all over the U.S.)
> Early Intervention: Get young children affected by prenatal exposure into the early intervention programs and fight for all the services that are available, including occupational therapy, physical therapy, speech, etc. These services at this young age promote brain growth and that is very beneficial for infants with FAS/E.
> School Personnel: You may need to educate the school personnel yourself. Don’t think it ends with the teacher–all school personnel need to be educated (even the bus driver). Because of confidentiality laws, many of the para-professionals (who spend more time with our kids than the teachers do) are not allowed this information. Everyone should be involved in the IEP process and a special invitation for the non-classified employee to attend it will promote more success in the educational program.
> Special Education Services: Students can qualify for Special Education under the category of “Health Impaired” with a diagnosis
of neurological damage from prenatal alcohol exposure. The Health Impaired category recognizes neurological disabilities or impairments. It is critical the individual with FAS/E be in this category, so their disability is understood as organic brain dysfunction instead of willful disobedience.
> School-to-Work Transitional Services (beginning no later than age 14): A majority of kids with FAS/E have peaked academically by this age and should be in a life skills or vocational skills program.
There are some great resources in almost every state that will help you to understand the federal IDEA laws that protect our vulnerable kids. We have the PAVE organization here in WA. To find the sister organization in your area, just call them at 1-800-5-PARENT. Also, an entire issue of FAS Times will be devoted to education in the near future.
MENTAL HEALTH
> Ask for an Independent Evaluation and fight for a Neuro-Psychological Evaluation. Not many mental health providers are educated on issues of prenatal alcohol exposure, so it is imperative you find someone who has had a background or training in this area. A neuro-psych evaluation will pick up the discrepancy between their verbal ability and their functional ability and will highlight areas of strength and weakness.
> Seek Providers Willing to Commit to Family more than 1 year. Providers have to be willing to commit to the family and child for at least 1 year to 18 months before they start to really “get it.”
> Discover the Appeal Process & Exception to Policy Procedure: Every system has an appeal process. If your disabled child is denied services, get the denial in writing and learn the appeal process. Also an exception to policy can be made in some cases, but you need to ask for it in writing with copies to more than just one person. We recommend the supervisors of your caseworker and the head of the agency be included.
® Maintenance vs. Treatment: For us, as families, we understand there is no cure for FAS/E, so let’s be realistic and talk about maintaining the individual and family. Treatment implies you’re going to fix it and we know that will not happen.
HEALTH CARE
> Early Diagnosis. The sooner the child is recognized, the sooner the family can put into place the appropriate and realistic programs to stop the onslaught of secondary disabilities as outlined by Dr. Ann Streissguth in her 1996 Secondary Disabilities Study.
> Trained or Knowledgeable Clinician (Pediatrician): Find or seek trained medical professionals in your area. This does not have to be a specialty clinic. A knowledgeable pediatrician who will really listen to you can be the cornerstone of success for families.
> Intervention is Prevention: The first step in prevention is making sure the most vulnerable, our daughters and sons, with FAS/E do not produce another generation of children disabled by FAS/E. Educate yourself (if needed) and your health care professionals to understand generational FAS/E and promote different methods of prevention and birth control.
CHILD WELFARE
> Full Disclosure to Adoptive & Foster Parents: In many, but not all states, there are laws in place that cover this vital need for disclosure of medical and mental health history of foster and adopted children. Know your state’s laws. (Every state has different names for its laws; in Washington State, they are called the Revised Codes of Washington or RCW’s.) You can typically find copies of them in your local/regional library. You may have to quote them in order to get the information that is required for the appropriate and loving care of our children.
> Training for Intake Workers on Screening for FAS/E. Promote this training regardless of the facial features of FAS and/or a low IQ. It’s time these systems got up to date and they start recognizing everyone that has brain damage caused by prenatal alcohol exposure.
CHEMICAL DEPENDENCY
> Screening to identify FAS/E & generational FAS/E: It is imperative that this screening take place or once again treatment dollars are wasted. Our kids/adults with FAS/E look wonderful in treatment and do well as they are a product of their environment; but outside the treatment “structure” they fall apart and cannot even remember the first of the twelve steps.
> Treatment plan to reflect Developmental Disabilities Model: Promote a treatment plan for the individual with FAS/E that is based in a Developmental Disabilities Model with less abstract concepts and more hands-on, concrete methods.
> Long Term support after treatment release: Individuals with FAS/E will not be able to replicate the program of abstinence themselves and will need environments that promote this. This is the reality of FAS/E. This system needs to quit wasting money with “revolving door” treatment.
CRIMINAL and JUVENILE JUSTICE
> Education of Your Community: Be proactive. Several parents have taken it upon themselves to seek out an officer with a mental health background and educate him/her about FAS/E. Then, if and when trouble occurs, that officer with a greater understanding of the disability is called for appropriate intervention.
> Protection under ADA: An explanation that the individual with FAS/E has a disability and is protected under the Americans with Disabilities Act (ADA) has been helpful in the past.
> Establish the need for an interpreter: It is very helpful to establish the need for an interpreter as many of our loved ones get coerced into agreeing to conditions they do not understand. The official term that some parents have used successfully is “advocate interpreter.” If you do not use this type of term, and your child is an older teen or adult, you may not be allowed to be present or participate in court proceedings.
> Neuropsychological Evaluation and Competency Capacity Hearing. These determinations will help in professionally documenting the underlining causes for the behavior of this individual–brain damage.
> Diversion Programs: Ask the court to consider a diversion program when seeking appropriate punishment.
DEVELOPMENTAL DISABILITIES
> Eligibility Door: Unfortunately the system of care most appropriate to take care of individuals with FAS/E has eligibility criteria that require an IQ below 70, so most of our loved ones do not qualify. This is where the appeal process and the exception to policy might help. It is also beneficial to start working with your state policy makers today and get this criteria changed.
> Qualifying criteria should depend on functional abilities rather than IQ: Seek testing and records that highlight functional inabilities rather than relying on IQ.
> Qualifying during childhood: Get the individual with FAS/E qualified for these services during childhood, if possible. It is a much easier transition into the adult systems.
> Traumatic Brain Injury: We have found some great successes using the basics of programs developed for traumatic brain injuries. We don’t need to reinvent the wheel. Get involved with DD community advocacy groups. They can give you some wonderful insights.
VOCATIONAL REHABILITATION
> Eligibility Criteria: Once again, be prepared to use the appeal and Exception to Policy route in this system.
> Educational Involvement Early: Make sure you are working with this system BEFORE your child graduates from high school.
> Testing Done on Functional Abilities: Be sure the vocational testing is realistic and takes into consideration the strengths and weaknesses of the individual with FAS/E instead of just asking what he/she wants to be.
> Long Term: Once again don’t let dollars be wasted on the promise of a 2 week job coach when we as parents know it will take much more long-term support for success in this current, very competitive job market.
Chaos in the Classrooms By Delinda McCann
In September 2007 the Fetal Alcohol Syndrome Family Resource Institute attempted to have a workshop with a focus on introducing a new generation of researchers and their work. We quickly discovered that many parents had burning issues they wanted to discuss so we set up some breakout sessions for them. The burning issues came down to the problems the parents were having with their child’s schooling.
The topic of schooling easily dominates every workshop we organize. It dominates the online lists. It dominates all mealtimes when parents with children with FAS get together. The topic of schooling easily produces more problems than all of the other issues related to FASD put together.
In the hope of making the school/parent relationship less stressful, I would like to offer some universal suggestions that will help schools function more effectively when dealing with their students with FASD. These are all things that can be accomplished without additional funds. Many fine teachers and administrators have used these techniques and found them effective.
1. ACCEPT that FASD is a real medical condition. Since the child was not yet born when the events causing the condition occurred, the child must not be blamed for having the condition. In no way or form should the child be discriminated against for having FASD.
2. ACCEPT that FASD is a lifelong condition of characteristic brain damage that cannot be taught, punished or loved out of a child. The teacher and school staff can only adapt the school environment in such a way as to keep the child safe and provide the optimum learning environment. In other words the school staff needs to set realistic expectations for themselves and the child by doing the best they can with what they have to work with.
3. ACCEPT that FASD is a medical diagnosis not a label. Stupid, lazy and noncompliant are labels. Most people who are diagnosed with FASD are relieved to discover that there is a reason for their difficulties. Please do not try to deny the diagnosis.
4. ACCEPT that children with FASD will come to school with a different set of requested limits from their parents. Just as children with chronic asthma or with diabetes have limits that are different from healthy children, the child with FASD will have special limits. Please respect these limits.
Acceptance does not mean thinking there is nothing you can do to make the school setting better for a child. Acceptance means taking a good hard look at yourself and the student and taking an inventory of the assets and liabilities you both have to work with. Once you have honestly taken inventory you can establish a starting point to begin to build a program of education based in reality.
We find that many of our students with FASD like to live in a world where they creatively reconstruct reality. The peculiar thing is that they respond very well to an environment where the adults are very clear in telling the truth about reality.
Finally be gentle on yourself, on the child in your care and on the family of that child. We are all working toward a common goal of educating our children so they can reach their full potential. It is not the children’s fault that much of their potential has been taken from them before they were born.