Table 2.

Supporting evidence of systems-level barriers for individuals with FASD

Participant [ID#]	Direct Quotation
	Barrier #1: Delayed Diagnosis
Foster/Adoptive Father of 3 and 5 year-old sons [C20]	A lot of them don't even know how to recognize certain, what this kid has, what's wrong with this kid, or what's going on. They don't see it. And then they get frustrated. Now they gonna label the kid as a “bad child” every chance they get, they gonna be kicking the child out of school. You know. That's not helping the child.
Adoptive Mother of 28 year-old son [C24]	Recognizing it early.. .The whole child was never addressed with him.. .They had him ADD, they had him fine motor. They never really could identify anything, but now it's [FASD] out there.
Adoptive Mother of 33 year-old daughter [C23]	I would say I accidentally discovered she had fetal alcohol syndrome disorders by watching a movie - The Broken Cord... And I searched out the doctor to find out if she did have it, and because, it just explained everything that I had gone through. We adopted her at three years of age, so we had gone, what 17−18 years, with just so much gambit of things, and not really understanding what she could do, what she couldn't do, it was so confusing.
Adoptive Mother of 13 year-old son [C15]	There's not that many [FASD experts] around, and even pediatricians don't have the knowledge to send you to where you need to go [to get a diagnosis].
FASD Educator and Advocate [P05]	A lot of the young people that I see now that I know had an early diagnosis and families that were really well educated and worked, you know, at this for years, they're the ones who seem to be doing very well. Where as there are others that I know they only got the diagnosis when they were twelve or thirteen and at eighteen or nineteen some of them are already having trouble with the law.. .It's just like there just was too much going on all those years, and people not understanding.
	Barrier #2: Qualifying for Services
Adoptive Father of 28 year-old son [C25]	You need to have FASD classified and recognized as a categorical developmental disability so it can get status, so that people can become eligible for Medicaid funded services. And the same level as people with autism, or learning disabilities, or any developmental disabilities to automatically get them qualified for Medicaid.
Foster/Adoptive Father of 20 year-old daughter [C14]	[biggest challenges] getting into the system where you can be qualified to receive like respite care, or other services like being able to take horseback riding lessons.
Educational Advocate [P03]	I know through us, they gotta be OPwDD eligible, and I know that one of the cases I did they had to appeal like 3 times. Because we have a great social group here but the child's gotta be eligible for our services... They have to fit in one of the 13 under IDEA to get services [in schools]. It's getting them to fit in one those categories to try to qualify them for services. So there is a challenge there too.
Foster/Adoptive Mother of 20 year-old daughter [C13]	I think it's harder too, when your child has an average IQ. Our daughter's was lower, and so it was easier to get the services.
FASD Educator and Advocate [P05]	You know more severely, cognitively - surprisingly those are the children who are going to get services, and the parents are going to get more support because it's a more visible disability.
	Barrier #3: Availability of Appropriate Services
Foster/Adoptive Mother of 7 year-old daughter [C06]	[What would be helpful?] A ready list of professionals or even places that we can seek help. I mean I had to do my own research, trying to find something somewhere because nobody seemed to know anything that would help.
Foster/Adoptive Mother of 5 year-old daughter [C07]	The counselor is important. Our struggle is finding a counselor who knows enough about fetal alcohol spectrum disorder to be able to help the child.
Neuropsychologist [P18]	I think there's one district maybe out of 15 that really gets it...a lot of advocacy required by me, and I'm happy to do it, but it just feels like we're reinventing the wheel in every district here.
Adoptive Father of 11 year-old daughter [C05]	There's so many people that need assistance and not so many people that are doing it. I mean they have the funding but you have to find somebody actually to do it for you. And it's hard to find people that are willing to, who are qualified.
Social Worker [P07]	One of the issues with mental health services especially has been Medicaid. You know they only have so many choices of places that they can go when their child is covered by Medicaid. So that's a huge issue.
Educational Advocate [P03]	The biggest challenge that if they actually need a day program, there's going to be wait lists due to the budget constraints in New York State. I don't know how many new programs are going to be developing through service agencies to meet the needs of all the kids transitioning out.
	Barrier #4: Implementation of Services
Educational Advocate [P04]	I would say the lack of information, and then the understanding on how to implement the strategies on how to work with the student. If you think the student is doing it on purpose, or you think they're just willfully - you know, the way you're going to react to it.
Adoptive Mother of 18 year-old son [C10]	[Teachers] can say “Oh yeah, we've had kids with FAS before,” but you haven't had my son. You haven't had her daughter, you haven't had your daughter, or your son. Every kid is different and I don't think they understand. I think that's the biggest drawback. They expect more out of them, and don't understand when they don't.
Adoptive Mother of 14 year-old son [C08]	And it's very hard because they don't know how to help in these groups. Even though there are groups that our kids can go to, once you get services, it's very difficult because they're not like the other kids with disabilities. They're not like them at all.
Adoptive Father of twin 15 year-old sons [C03]	When they take a test they're supposed to be taken out. One of the teachers told me if they don't use that privilege they'll lose it. And that came up in a meeting and I found out that she was wrong. It's not use it or lose it - it's there forever.
Foster/Adoptive Mother of 20 year-old daughter [C13]	They've got so many budget cuts. But they [Medicaid coordinators] just don't have the time to spend like they used to. Ours used to spend a lot more time with us.
Adoptive Father of 12 year-old son [C12]	I think that's where we struggle with. This is so fragmented that I gotta go here for this, gotta go here for this, gotta go here for this. And if I didn't know this was over here, if I heard about it, I'd go over here. But some days, you really have to tie all the pieces together.
	Barrier #5: Maintaining Services
Adoptive Father of 11 year-old daughter [C05]	We've tried to educate them on the subject, and they still to this day, when they see her, they think she's advancing, they want to pull things back. “What does she need an aide for? Why does she need to have the study notes sent home with her?”... After a while they seem to think that we're crazy, that we're over protective.. .we want to be proactive.. .The reason that she's been able to excel to where she is now, is because of all that's been in place since she was a baby. If not for that we don't know where she would be.
FASD Educator and Advocate [P05]	One of the things that I see a lot of in the schools is that they're always trying to, you know, push the child to the next level of independence, which is not in itself a bad thing, but in many cases what they don't realize is that some of the supports and structures that were in place, is why the child is doing better, and once you take those away it's like pulling one of the legs out of that proverbial three legged stool, where all-you know, its holding it up, but when you pull it away, it all falls apart.
	Overarching Construct: Lack of Knowledge of FASD
Adoptive Mother of 33 year-old daughter [C23]	Society needs to be more aware of this disability. There's nothing now. No conversation for fetal alcohol syndrome disorder. There are no services, no helps. There's nothing for adults, basically.
Adoptive Father of 12 year-old son [C12]	I think that's across the board too, you know your pediatrician, your doctor... we have to educate everyone we come in contact with what is FAS. How does this exhibit. I mean it can be from a Sunday school teacher, to a coach, to anybody you know. Like I said, pediatricians, doctors, who should know, don't.
Biological Mother of 9 year-old daughter [C01]	Well when we go out into the community it is hard with church and stuff. We've gone through a couple of different churches because of the behaviors. People just don't understand and they don't have the compassion.
Foster/Adoptive Mother of 7 year-old daughter [C06]	I think the biggest challenge is that people don't understand why they do certain things, what their challenges are. Most of the time they appear normal and then something sets them off and you've got a wild child.
Adoptive Mother of 14 year-old son [C08]	I don't think too many people are that well versed in FAS. You know administrators, even. I don't think Special Ed. - you know CSE chair people - I don't even think they're that well educated about FAS.
Pediatrician [P02]	Too often is that teachers don't know about Fetal Alcohol Syndrome. They don't know about it, they have not had training about it. The school system, the school environment in which they work doesn't allow them to provide the kind of time that it takes for a child. teachers have an especial challenge.the disability, it doesn't always appear to be a disability. You know sort of the data that teachers typically rely, often times are in the normal range, and so it can lead to substantial challenges as teachers.
FASD Educator and Advocate [P05]	I've tried to educate a lot of the providers who serve as advocates in the school, so that hopefully they have information. Really just try to get it almost through the system, but it's really a challenge because I find that no matter how many times I've been there, there's always somebody with a question that makes it very clear that they don't understand FASD at all.
Therapist [P10]	I think there needs to be more knowledge, and then a grassroots surge of people who are putting pressure for more services and insurance companies, and making this more widely known. It's got to be diagnosed more often. There has to be more study.