Town Hall Meeting
Grand Rapids, Michigan
August 17, 2002

Testimony submitted by Mary Browning, Ann Arbor, Michigan:


I have two adopted sons who are ARND, one more seriously effected than the other. I also help with the FAS Diagnostic and Intervention Clinic in Washtenaw County. My sons are in their 30's and, while they were growing up, no one --teachers, psychologists, psychiatrists, social workers-ever suggested that FAS/ARND could be the reason for the problems they encountered. We know the mother of our older son (the less affected) drank during her pregnancy. He has never been diagnosed. He is an alcoholic, but does work full time (busses at two different restaurants). His major problems (aside from the alcoholism) are money management and developing relationships. Our younger son was abandoned as a toddler and no family history is known. He was diagnosed when he was 28 as having alcohol-related neurobehavioral disorder, static encephalopathy, alcohol exposure unknown. He has been incarcerated twice. The services he has received(SSDI and connection to Community Mental Health) have come about because of his schizophrenia, not his ARND.

There are many needs. I'll mention 5 areas.

  • Prevention. All alcohol ads and places that sell alcohol need to have VERY visual statements about the risks of drinking when pregnant. Medical clinics need to do much more educating about this problem. More research needs to be funded to develop biomarkers which can detect alcohol exposure to the fetus and also the effect on the fetus.
  • Diagnosis/Education. Teachers, psychologists, social workers, and medical and criminal justice personnel must be educated about FAS/ARND. Too many know nothing or too little about this condition. It would be wonderful if all the different names for the neurodevelopmental damage done to the fetus by alcohol could get one overall name that would be recognized and accepted by the various professions and school and government groups that deal with (or should deal with) this disability!
  • Job Assistance. Job coaches are needed who are proactive and don't wait for an FAS/ARND individual to come tell them there might be a problem. These individuals often can work, but it must be at something for which they have some aptitude, something they like to do, a job where the expectations and supervision are consistent, and for my younger son, at least, it must be where he feels he is liked by his supervisor and his co-workers. This means that they, too, must have information about his condition and all that it entails. One success with our younger son occurred when our parent support group invited a representative of Community Mental Health (CMH) to a meeting to listen to our concerns. Jobs were one of the topics. I mentioned that the one skill our younger son seemed to have was working with very physically- and mentally-disabled people, but because of his prison record, he could not be hired by any institution to do this. She said she saw no reason why CMH couldn't hire him to be an aide in one of their adult day care centers. In three weeks he had a job and, two years later, he is still working, 4 hours a day, 4 days a week.
  • Housing. Housing is more than a place to sleep. It should also be where there is someone an FAS/ARND individual can talk to, can trust, can explain his plans and decisions and get intelligent feedback. My younger son needs an outside brain, and he needs it often. It would seem that persons overseeing supportive housing would be the logical people to help provide this. Another parent at this camp conference asked me today if we had made long-term plans for our son. I realized that, aside from establishing a special trust for him, we have not. We are still living and coping day to day, hoping nothing awful will happen, wondering what will come next. And I don't know how to make long-term plans for when we are gone, because there don't seem to be any services out there to connect him to.
  • Recreation. Many FAS/ARND individuals get into trouble because they have time on their hands, they want friends, and they gravitate to people who pay attention to them. Unfortunately, many of these are people who see them as easy marks and take advantage of them. I think that supportive housing can help in this area, too, as it would supply a group of people to do things with and hopefully someone to help plan recreational activities.

    Mary Browning
    1229 Wines Drive
    Ann Arbor, MI 48103

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