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Resumen de Investigaciones sobre el EDAF

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Town Hall Meeting on Fetal Alcohol Spectrum Disorders
Phoenix, Arizona
June 29, 2004

VIP Panelists

Georgia Butler, Indian Health Service
Robert Cannel, Arizona State Senate
Mariddie Craig, White Mountain Apache Tribal Council
Robert Evans, Governor’s Office of Children, Youth and Families
Julie Gelo, University of Washington FAS Diagnostic and Prevention Network
Linda Lopez, Arizona State Representative
Ruth Solomon, Arizona Department of Education
Mary Jo Whitfield, Value Options

Moderators

Candace Shelton, Johnson, Bassin and Shaw
Kathleen Tavenner Mitchell, National Organization on Fetal Alcohol Syndrome

Testimony

Grandmother and father of child With FAS spoke together. The grandmother needs help with her grandson's teachers and the school system. Her grandson comes home and needs to have his diaper changed. He does not know how to eat on his own. He has not learned much in school, and sometimes it looks as if he has been hit while at school. Her grandson also needs public transportation adapted for his needs.

The father explained that his son is 18 years old and has been at his current school for 3 years. Now that he is 18, he may be unable to continue to attend school. The school is 40 miles from their home and the roads are bad. His son was further disabled by a motor vehicle accident that occurred when he was 7 or 8 months old. Other siblings also have learning and behavior problems, but none of them has been diagnosed with FAS to date. However, the mother was drinking during her pregnancies. His son's current school is not well funded, and the teachers do not know about FAS and how to treat children with it.

A mother of a 42-year-old with FAS is a recovering alcoholic. She wanted to talk about her own grief, pain, and shame as well as how this disorder has affected her son. This is a disorder that will never go away, although it may improve if proper services are provided. She drank from the age of 16 and had her child when she was 18. When she was pregnant, a doctor gave her amphetamines to help keep her weight down. Her son never bonded to her as an infant and could not nurse properly. She felt rejection (in the form of stiffness and crying) from her infant son.

Later her son was diagnosed with a learning disability and put into special education classes. Her son began abusing substances and was arrested on multiple occasions. He has no sense of right or wrong, or he cannot remember what is the right thing to do and what is the wrong thing. He also has a poor sense of self-preservation. At one point he went off his medication, got very paranoid, and was arrested again. He will now spend the rest of his life in prison. At least in prison, he has a structured environment with which he can cope.

A woman in recovery who works in a treatment setting said that she believes that until people come together as a community and address FASD, nothing will change. In particular, she was concerned that FAS often goes undiagnosed. Her daughter's stepson was diagnosed as having attention deficit/hyperactivity disorder and conduct disorder but has never been assessed for FAS, even though his birth mother drank during pregnancy.

A family member of a person with FAS began by expressing his family's appreciation for the work done by the FASD Center for Excellence. He offered his testimony on behalf of a family member who has FAS and recently graduated from high school. He and his wife are the adoptive parents of this child, and he has long been an advocate for cultural rights and the rights of people with disabilities. He sees many violations of the civil rights laws that protect Native Americans with disabilities.

His son needs vocational training services. He currently is receiving benefits from Medicaid, Social Security, and the Indian Health Service. The barriers to services he sees include a lack of transportation and a lack of commitment to hiring people with disabilities. He expressed an interest in coordinating a similar town hall meeting for the Navajo Indian Nation.

Three siblings with FAS live with the same adoptive mother. They all have FAS and wanted to explain some of the problems that people with FAS face. One brother said that he has emotional outbursts for no reason and later feels remorse. He also feels frustration and has a harder time learning than other youth his age and therefore has to work harder.

The sister has a hard time in school. She has poor judgment and forgets things easily. She is in Alateen, which gives her some support for family issues. Still, she becomes depressed easily.

The other brother said that he has difficulty living with his disorder. He used to have 3- to 6-hour screaming fits when he was younger and still has many emotional problems. It takes much more time for him to process information and do schoolwork than it does for other people his age. He also does not understand verbal instructions and must see a person deliver information in order to understand it. He has trouble with time and money management as well. He became frustrated when he could not understand why he was having difficulties and felt very alone. If his mother were not a strong advocate for him, he would have a much harder time in school.

A mother of children with said that she has to educate her children's teachers on a daily basis. The school told her first child that he was stupid and could not learn. She home-schooled him until she could get a scholarship to a private institution, which was difficult. It takes about 2 years for her to get a new teacher to understand the problems associated with FASD and how to treat them. For example, she has had to convince teachers to stop using a behavior modification system designed for students who do not have FASD, because it will not work with those who do. Her children are easily victimized by others and sometimes behave inappropriately.

People need to understand that her children's behavior is a result of a neurologic problem. She noted that there are no services for adults with FASD who do not also have developmental disabilities. Individuals with FASD operate best in a highly structured environment and need services that can provide that.

A woman who works for the Navajo Nation in the behavioral health field stated that FASD affects about 1 in every 100 people in her community, or more than 3,000 members of the Navajo Nation. However, only one person is designated to provide bilingual services in English and Navajo for them. In New Mexico, individuals with FASD are included in the State health plan that provides them with services, including substance abuse treatment. She does not know if Arizona is doing anything like that. Obtaining a diagnosis of FAS takes a long time and is costly. More needs to be done to support screening and diagnosis of this disorder.

A grandmother of a grandchild with FAS said that she spends much of her time caring for this child, who always will need a lot of support. She emphasized that there are significant problems with the education system for children with FAS. She believes that it would be better if a charter school could be established for these children. Her daughter could not get the substance abuse treatment services she needed in the State. Barbara stressed that longer term substance abuse treatment and rehabilitation services are needed.

A woman in treatment for substance abuse is a single mother with four children who have a family history of alcoholism. Her two youngest children probably have FASD. Her son is 8 years old and has trouble doing simple things such as speaking and going to the bathroom. She could not find a substance abuse treatment program that can deal with his needs while providing her with treatment, so she is apart from him. She worries about her youngest child, who also was exposed to alcohol, although he was not diagnosed as having FAS at birth.

A woman with alcohol-related disabilities said that she was born with seven disorders related to fetal alcohol exposure, including webbed toes, poorly developed limbs, and problems with her sphincter and urethra. At the time she was not diagnosed with FAS but rather as having "birth defects." She was abused by her mother because of problems relating to her disorder, such as being unable to control when she went to the bathroom. Her lungs also are poorly developed, and she has had pneumonia 52 times during her life.

A woman in substance abuse treatment has a 4-year-old son. She was addicted to methamphetamine. She stopped using that drug and began drinking when she got pregnant, because she believed it would be better for her child. Her doctors never noticed that she was regularly using alcohol and seemed more concerned about her drug use than her alcohol use. After her son was born, he was diagnosed with autism and mental retardation, but no one diagnosed an FASD. Her son is very emotional and feels hurt easily. His lungs are not fully developed, but he is not mentally retarded.

A mother, friend, and educator with a son with FAS described her son. While he looks like an adult, he still acts like a little boy. He needs help with things like remembering to use soap and not hugging women he does not know. Her son qualifies for developmental disabilities services, but he is in the minority. Only about 15 percent of those with FASD qualify. Her son recently left home for a residential placement in a supervised setting, which is only possible because he qualifies for disability services. However, many who do not qualify could use similar services.

A woman who works in a substance abuse treatment program stated that there is a great need for more treatment services for mothers with their children. She also noted that more education on FASD is needed. Her own daughter has learning disabilities and has questioned whether they are related to her mother's drinking. Thankfully, Head Start was able to help her daughter, but educators and hospitals need to learn more about FASD.

Summaries of Written Testimony

Anonymous submitted an unsigned letter that stated that she was currently in an outpatient treatment program and had attended this conference along with her treatment counselors. Before this meeting, she had never thought that her children had FASD. At the meeting she learned some things about the disorders that led her to wonder if her children are affected. She asked for more education concerning FASD for treatment clients and counselors in the Navajo Nation.

A mother in recovery wrote that she got sober after discovering she was pregnant and hopes that her child, now 5-1/2 years old, is unaffected by her substance use. She noted that addiction is a disease and needs to be treated properly. As a mother she knows that she would not purposely harm her child.

A woman wrote that she is living in a halfway house for people with alcohol problems. She has two daughters who do not reside with her. She was using cocaine, pills, and alcohol when she first got pregnant. When she told her doctor about her alcohol and drug use, he said to stop and everything would be fine.

When she was in her second month of pregnancy, she began bleeding and was told she had had a miscarriage. At that point she began using again to dull the pain, but she still felt pregnant. After going to another doctor, she was told one of the twins she had been carrying had miscarried but the other was still viable. She was told to stop the cocaine and limit herself to a few drinks.

When her first daughter was born, the baby had eczema and severe asthma and became ill easily. Because she and her husband had money, they could provide her with the best medical services and send her to private schools. She was not drinking when she had her second daughter, but her substance abuse has affected both daughters emotionally.