Social and Cultural Determinants of Developmental Disabilities

Social and Cultural Determinants of Developmental Disabilities


(electronic bleeps) – I’m gonna move right along to Dr. Rubin, who’s gonna talk about Social
and Cultural Determinants of Developmental Disabilities. Dr. Rubin. – [Leslie] Thank you. Hello again. I’m back. (audience laughing) All right. Thanks, Mark. Mark and I have been friends for a long time. You’ll see a lot of overlap because we have similar thoughts and approaches. We shared our slides earlier
(laughing) this year but couldn’t help but repeat some of the things. If you hear it again, it’s good. It means it’s important. Okay, good. Disclaimer, same as Mark’s, right? Okay. What do we mean by the social
determinants of health? What are they? Earlier on there was a
talk about a medical model. It’s a concept that you’re well. Something happens to you. You get sick. You get treated, you get better, you carry on with your life. That sounds like a very simple kind of Newtonian concept. The concept of social determinants makes it so much more complex, and Mark has given you some sense of the environmental, the social, and the economic aspects. What the social determinants are are those circumstances in which you live, your environment, your income, the people around you and what you do, how you
do it, with whom you do it. Those factors, they don’t exist in isolation. They exist within a larger context. The larger context is the economic, political, and social environment. We are sitting here in
San Francisco, California, in the good old US of A, but there are many other people sitting in different parts of the world, perhaps talking about the same thing under totally different political, social, and economic circumstances. Their health may well be affected by the factors under which they live. The people here in this
state of California who are living under circumstances that are very different
from those that we live in, that will affect their
health and well-being. Those are the social determinants. I’m going to tell you a personal story. I’m a developmental pediatrician. I did my medical training in South Africa. Then I went to Cleveland, Ohio, Case Western. Then I went to Children’s
Hospital, Boston, the Harvard Medical School. Then I went to Atlanta, Georgia. I knew a lot about
children and development all very well. When I landed up in Atlanta, I started a cerebral palsy clinic. I started a cerebral palsy clinic in downtown Atlanta. Downtown Atlanta, as with many other major
cities in the 1990’s, 80’s and 90’s, was really just a place where they
were very poor people who just had limited resources and predominantly minority. That was the environment in which I lived. By the way, just over the 20 years
I’ve been in Atlanta, the inner city has kind of emerged like so many other cities that have become gentrified. I will carry on with my story. This is just a picture within our clinic of the orthotist putting on a little brace on a little boy and you can see the context in which
that clinic takes place, a little bit of clutter around. It was really very Third World kind of clinic at the time. What happened was we had collected data. We took the CDC’s criteria
on cerebral palsy, and we entered the data
on every child we saw from the very beginning. By the time we had the
clinic for about four years, we had a couple of students
from School of Public Health who came and reviewed our data. They found, as we would have expected, a complex set of medical and developmental complications. Okay. I’d hoped to see that
and quantified and so on, but really what happened was that we found this set of demographic factors which I’d totally not anticipated at all. This set of factors said that many of the mothers of the children in our cerebral palsy clinic had been taking drugs during pregnancy. Alcohol, tobacco, and cocaine was the street drug of the times. There were many others, marijuana and the like. They were born prematurely. When we surveyed them, they were not living
in two-parent families as you would have expected. The breakdown was quite,
quite significant, and I’ll show you now. This is the rate of prematurity. 28 weeks is over here, and it was highly correlated with substance abuse. The greater the likelihood
of substance abuse, the greater the likelihood of prematurity. As they got closer to term, less likelihood of substance abuse. The greater likelihood of substance abuse, the greater likelihood of prematurity, the greater likelihood of cerebral palsy. Now, where were the children living? 50, 60% were living with single mothers, 60%. These are the premature infants. I’m just going to talk about them in blue. The premature infants, 60% were living with single mothers. Almost 20% were living with grandparents, almost 10% living in foster care, and only about 17% living
with both biological parents. For me this was a really dramatic turning point because I had not appreciated the fact that these kinds of circumstances, the social and economic
circumstances of poverty that lead to substance abuse, that lead to prematurity, that lead to a family constellation that is
predominantly single mothers or outside of the family, the traditional mother-father, biological mother-father
family with grandparents or in foster care. There was a remarkable paper. It came out just under a year ago, in April, about child poverty, Mediators of Child Poverty. I strongly recommend it. I’m going to walk through some
of the statistics with you. They looked at child
poverty and found that if you looked at poverty, it was predominantly associated
with minority children, that the families tended to have a poorer education. If they had some college education, only 13% were poor. If they had less than high school, then almost 60% were poor. Employment. If one parent worked full-time, only 9% were poor. If no parents worked full-time, almost 50% were poor. What do we see as a result of poor, less educated mothers? This is from the CDC and their Developmental Disabilities
Surveillance Project. They correlated with age. These are the ages underneath, but the age was not
important to this purpose. It’s the degree of the number of children with disabilities. Percentage of children
with cognitive impairment by mother’s education. The darker one is that
mothers had less than a B.A., and the lightly shaded one had a B.A. or higher. The lightly shaded ones
were more educated. As you can see, at every age level mothers who had better education had less kids with cognitive disabilities. Mothers who had less education had more children with cognitive ability. It’s not just the result
of some cognitive ability, the consequence on the mother, but the consequence on the children. Here’s some more issues of disparities. Absence of the fathers in the home is associated with a
fourfold risk for poverty. 42% of single female-headed
families are poor versus 12% of two-parent headed families. You can see where my
demographic’s coming in, and here’s another one. Children of single mothers are at greater risk for infant mortality. They will die. Child maltreatment, child abuse, failure to graduate from high school, and incarceration. I won’t even go into incarceration. It is really quite a shameful part of our culture but I will show you this,
which is also shameful. This is disparities in mortality, and this is the US of A. This is infant mortality by one year, the number of death per thousand live births one year. Bless you. Okay. For wealthy mothers it’s
about just over two. If you look at the whole world, the statistics of the whole world, around two or just under
two is what you see in Japan and in Scandinavia. It’s the best statistic. The statistics for the US as a whole is about six, which is pretty poor. It’s somewhere around the 30th or 40th in the world, but if you look at the kids who are poor or disadvantaged mothers, they’re up there and really in some of the poorer
countries of the world. We have this shameful situation of health disparities,
of mortality disparities. Also, the poorer kids tend to live in a concept called the built. We all live in built
environment, by the way. The built environment is the environment we live in like this. This auditorium is part
of our built environment. The street where you walked to come here, the environment of this university campus, all part of the built environment. Built environments are
different for different people. If you look at the built
environments of poorer communities, then they’re unsafe neighborhoods because of traffic, crime, litter, trash, food desert, and limited green space. Because of all these issues, the kids can’t go out and play or can’t be safe in going out and playing. They could be attacked, assaulted and killed, and they can’t even exercise so they stay home and watch TV and eat fast foods because they don’t have Whole Foods or any of
these fancy grocery stores you have down the road here. They also live in older
houses with poor condition, and there’s three and a
half times more likely to have lead toxicity. Mark spoke to you about
lead toxicity a moment ago. It’s associated with
intellectual impairment. They go to older schools
in poor physical condition with teachers that are
underpaid, underappreciated, and really not doing all that good a job because of a variety
of other circumstances. For poorer kids, they’re 50% less likely to
graduate from high school and twice more likely to be unemployed. You’ve got poor graduation, unemployment, and you’ve got lead and you got obesity and you got all these kinds of things. What’s happening? This is a study, a report in Pediatrics 2003 by David Wood, who was also an author in that poverty chapter, poverty paper I was telling
you about from last year. David’s now at East
Tennessee State University. He’s done a lot of work on poverty and this was what he showed, that if you look at the kids in… I’m getting a stiff neck here. Better on this side. All right, if you look at the kids who are poorer versus those
who are not poorer, you’ll see they’re more likely to have
developmental disability, twice as likely to have grade retention. Is it right? I’ve gotta come up here. Okay, good. This is better. I was looking at it strangely. All right. There’s more likely to
have developmental delay, more likely to have learning disabilities, twice as likely to be retained in school, twice as likely to be
expelled or suspended, more than twice as likely to drop out, and twice as likely to be unemployed. There’s all the statistics for you. These are poor kids that are landing up in poor schools that are in disrepair and all sorts of bad things. Smoking prevalence. Let me just talk about smoking and I think, Mark, you spoke about, no, you didn’t. Okay, I’ll talk about smoking. Okay, smoking’s not good for your health. (audience laughing) Yet, 5.6% of people with
graduate degrees will smoke, 9% of those with a college education that’s not a graduate degree and 24% who do not graduate from high school. Unemployed, didn’t graduate, smoking. Already Mark was referring
to cumulative factors. Let’s move on. This is one of my favorite slides because of the message in it. The mother who smokes has a problem herself with her lungs and other organs, including the brain. The fetus gets affected, and we know that fetuses exposed to smoking
in utero are smaller. They have smaller head circumference and they don’t function
as well cognitively as their peers when compared, but what I didn’t realize was that the toxins of the cigarettes get not just to the fetus but the fetus reproductive cells. What happens is that longterm effects of the
offspring of mothers who smoke have other diseases such as hypertension, type 2 diabetes, respiratory dysfunction, neurobehavioral defects, and impaired fertility. The toxin doesn’t just affect the mother. It affects the fetus not just in the size of the fetus and the
neurological development, which I’d known for a long time, but by these other diseases and by impaired fertility. If we look at the concept
of cumulative stress or cumulative problems that affect, can you make it just a
little bit darker please so that you can see the picture clearer? All right. Can you see it? (audience responding) All right. Okay, poverty. We spoke about lead and Mark spoke about other toxins, greater degree of exposure, air pollutants and so on. Exposure to tobacco
smoke, greater likelihood. Unsafe neighborhoods. Stressed single mother. Experiencing violence in the area, child abuse and other violence. Insecurity and anxiety and limited access to health care, because in the poorer areas you’re not going to get the same access as good health care. You don’t have the same kind of insurance. Your insurance is what
the state gives you, and you’re lucky if you get
some good services on that. I don’t know what it’s like
in California but in Georgia, it’s really tough and we have
to work with what we had. I spoke to you about early
intervention earlier on. That is our safety net. The early intervention, the state programs are our safety net. The early intervention programs and the public schools are our safety net. The public schools are where
the kids get their lunches, where the kids get their therapies, where the kids get their
education regardless. Okay, I’m going to refer
you to a Pediatrics article in January of 2012 called The Lifelong Effects
of Early Childhood Adversity and Toxic Stress. Toxic stress is a phenomenon where children experience strong, frequent, or prolonged activation of the body’s stress response system. All their insecurity, child abuse, moving, fear of getting injured without the buffering protection of a supportive, adult relationship. Mark spoke about resilience and one of the most powerful, positive forces in a child’s life is a strong, caring, protective parent. That’s the bottom line. Whatever the stresses,
whatever stresses might occur, if there is a strong,
supportive, consistent, caring adult presence, that child will do so much better. If there is not that buffering protection of that adult relationship, that child will suffer with persistently elevated
levels of stress hormones, Mark spoke about that as well, which can disrupt developing
brain architecture. We had not realized that it can actively
disrupt brain architecture and result in this
collection of consequences. Problems with learning,
memory, and executive function, impaired decision making, behavioral self-regulation disorders, impulse control, and
risk-taking behaviors. What happens if you don’t, if you can’t learn as well, you take risks, you have impulses and all
these kinds of things? This is the collection
of longterm outcomes. School failure, unemployment,
single parent-ness, homelessness, substance
abuse, gang membership, violent crime, incarceration, and poverty. The USA has the highest incarceration rate in the whole world. It is 700 people per 100,000 population. The next country, good old friend of the USA, Russia. (audience laughing) – [Attendee] We’re number one! – Number one! (laughing) (audience laughing) In Russia, it’s 400 per 100,000. In Europe, it’s in the
two digits per 100,000. That’s the story. In addition, the chronic stress has steroid hormones and these disrupt not just
the brain architecture but the whole neurohumoral mechanism resulting in obesity,
diabetes, hypertension, stroke, and early death. I created this kind of image because when I first realized those social determinants of poverty and substance abuse, I created this cycle. It’s called the cycle of
disadvantage, which is social and economic, and disability. Poverty, poor community support, poor health services,
poor education result in feelings of despair and
self-worth in the teenagers. What happens is these kids
have a poor education. They don’t have much of a future. They can’t see. When you were young, when
I was young, I would think, “I want to be a doctor. “I want to be something.” You have role models. You have parents who support you. These kids don’t, so they get then what are they gonna do in their lives? The only thing to make them feel better is self-medication. It’s self-medication. They take drugs and sex, sex and drugs and rock and roll, right. (audience laughing) All right. What happens is they get pregnancy. They get pregnant and they don’t take care of themselves and they’re taking all these drugs, risks of sexually transmitted
diseases like HIV. The babies are born prematurely, low birth weight, fetal alcohol syndrome. The babies are irritable, have medical
needs, developmental needs. These mothers are still these
young women who still have lack of supports in substance
abuse and increased demands. These kids land up with neglect and abuse, foster care placement, neurodevelopmental disabilities, and health concerns and you have the cycle. That’s the depressing part. The question is, can we make a difference? – [Audience Member] Yes. – Okay, good. Good, good, good, good, good. (audience laughing) All righty. We can make a difference. We can make a wonderful difference. All right, now I’m gonna
just end off by showing you just some examples of the
difference we can make. There’s a big difference we can make. This is a rat mother who loves her rat pup. (audience laughing) She’s a mammal, and she
will feed her little pups and she will look after
them until they can fend for themselves. Okay. This is research that comes
out of McGill University where they found that they could create these two strains of rats, one where the mother rats
fed their little rats and they landed up having
low cortisol levels with low anxiety. When they grew up, they in turn licked and groomed their offspring. Licking and grooming. That’s what the mother does. She licks them, she grooms them. They feel the sensory stuff. She feeds them, she looks after them, and they in turn become good mothers. Just the licking and grooming, by the way, I had always thought
it was just the sensory but it’s turning out there
may be some microbiomic phenomenon going on there as well. That’s just emerging as we speak. On the other hand, these rat mothers don’t have that same instinct to lick and groom their offspring, so these guys are neglected and they land up with
high cortisol levels, high anxiety, and they don’t lick and groom their offspring. You would think this is a genetic thing, so what are you going to do about it? What these guys did, the researchers did, they took these little pups and they gave those
little pups to this mother and she licked and
groomed those little pups, and what happened? They went on to lick and groom. (audience laughing) Our message is that to mothers, lick and groom your babies (laughing). (audience laughing) All righty, so that’s the babies. This was an article in Pediatrics, April of last year. Man, April of last year
was a good year for good articles for me. Maybe it’s the only journal
I read last year, but anyway. Anyway, this is a group who took… I like the language they used. They used low-resource and high-resource family instead of poverty and wealth or affluence and poverty or any other markers. They just used low-resource
and high-resource. I think we heard that earlier today, low-resource countries,
high-resource countries and so on. What they did was they had a group who were control where they did not give
early intervention. These were kids who had some problems in the newborn period. They gave others early intervention, which is the dotted line. For the high-resource families, you follow, these are the guys who did not get early intervention in
high-resource families. That’s where they landed up. For the intervention group, they landed up actually
doing a little better than their counterparts who did not have any intervention in
the high-resource group. You can see the difference is minimal. For the low-resource families, this is the trajectory for the ones who did not have intervention and this is the trajectory for the ones who did have intervention which landed up in just where the
high-resource families are. Okay, they didn’t lick
and groom their offspring but if you give them early intervention, what is early intervention? Stimulation, interaction, engagement, something, the positive support that will encourage them. It comes back to Mark’s
point about resilience with that balance. This is where you have
the positive impact. We can have it in the newborn period. We can have it early intervention. This is the one Mark was
talking about as well which is the Perry Preschool Program. This was a program. Was it 50’s or 60’s? Somewhere around there where this group of kids, poor kids, was it in Nashville or somewhere, Mark? – [Mark] I don’t know where Perry is. – Yeah, I think it was– – [Mark] Illinois, I think.
– Illinois. All righty, Illinois. One of those states. (audience laughing) I’m a foreigner. What do I know? Anyway, they took little kids, age three, three to five. These are poor children with a low IQ. What they did was they gave
them two and a half hours of preschool program every day of the week during the school year and they supplemented it with weekly home visits by the teachers. They followed them up at
15, 19, 27, and 40 years. That’s a longterm follow-up for you. What they found was the following. All right. The intervention is
the darkly shaded area, and the control is the
lightly shaded area. Here’s special education, and you can see that the kids who did not have the benefit needed more special education. The kids who did have the benefit, less special education. For those who scored above the 10th percentile academically, you found many, many more of the kids who had intervention than the kids who didn’t
have intervention. High school graduation, more of the kids who had intervention than didn’t have intervention. Earning more than $2,000 a month, much more of the intervention versus the non-intervention. Own their own home, much more with intervention than not intervention. Never on welfare as an adult, much more on the intervention. You can see that intervention at two and three years of age also made a difference. Another group that I didn’t display here because of the lack of time was a group of, I think, a couple of million kids in the New England area. Researchers from Columbia University and Harvard University studied the impact of a teacher in fourth grade. If there was a teacher in fourth grade that made a big difference, it was called a high-value teacher. Those kids also went on to get to these levels and what’s more, they saved money for the future. Saving money for the future is looking into the future. The future is the children, so their children will benefit. Not only do they benefit individually, but their children will benefit. They have a home. They earn more money. They can look after their kids better, and their kids will do better. In summary, infants and children who grow up under adverse social and
economic circumstances have greater likelihood of
neurodevelopmental disorders. In addition, there’s limited access
to appropriate education and health care that compound the problem. It is our responsibility to
identify at-risk children as early as possible and provide appropriate and intensive early support and intervention to assure good access to good educational opportunities and quality
health care in life. My conclusion is as follows. Although these issues are issues of public health and public policy, each of us individually
has a responsibility to improve the lives of the children and families we come into contact with or those within our environment. This is the message I
want to leave with you is that if we can make a difference in the life of a single child, that child can go on to make a difference in the whole world. This is a saying that if you save the life of a single child, it is as if you are
saving the whole world. All righty. Thank you. (audience applauding)

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