 is Harold Pollock who just has an immense presence both throughout the campus and nationally so I'm delighted to be able to introduce him and he's really funny. Harold Pollock is the Helen Ross professor at the school of social science administration and is a professor in the biological sciences collegiate division in the department of public health sciences. Professor Pollock is the co-director of the crime lab and the center for health administration studies at the University of Chicago. He's published widely at the interface between poverty policy and public health. His recent research concerns HIV and hepatitis prevention efforts for injection injection drug users drug abuse and dependence amongst welfare recipients and pregnant women infant mortality prevention and child health. He received his undergraduate degree in electrical engineering and computer science from Princeton University, holds master's and doctorate degrees in public policy from Harvard and was a Robert Wood Johnson scholar in health policy research at Yale. Today professor Pollock will speak on the topic gender and socioeconomic disparities in caregiving for fragile exit syndrome. Welcome Dr. Pollock. Thanks so much I wonder if there's a if there's a video that I can turn to that has the answer to all the questions about the phone plans because as they were going through that I was like yeah that's a good question. So I want to talk today about some joint work that I've done with Rebecca Feinstein who is a doctoral student at SSA and is now at Hebrew University of Jerusalem where we interviewed caregivers for who are taking care of individuals with fragile X syndrome. Just to give you a little bit of a road map I'll tell you a little bit about what it is because some of us here are familiar with it and some not and talk about the personal challenges that the 39 people that we spoke to related to us and how disparities emerge in many ways ironically through helping systems that are nominally supposed to provide assistance to people on the basis of need and some suggestions for what we might do about that. In some ways the challenges that we talk about in our work are actually ironic consequences of the success of American public policy and changes in American life over the past 40 or 50 years. Talking to people we heard a lot of sad things from caregivers in a multi-generational context this is not a sad story. It is dealing with new dilemmas that emerge from some of the positive changes two of which are deinstitutionalization and the increasing lifespan of individuals with intellectual disabilities. Because of deinstitutionalization which is a word that has in some ways an unfair negative connotation to it most people with intellectual disabilities are living now on a human scale in their own communities often in their own family homes and they're also living a lot longer. The median lifespan among people with mild or moderate intellectual disability exceeds 70 and even people with more severe disabilities are still living much longer than they used to and that means that men are going to outlive their primary caregivers. Right now an estimated 855,000 Americans with intellectual disabilities live with a caregiver who's over the age of 60 and this is one of the major challenges that we face and most of these caregivers don't have a plan for what's what's going to happen when their loved one needs care and they themselves are no longer best equipped to provide it. Many are on waiting lists for services. 365,000 families are currently on waiting lists for Medicaid home and community based service waivers and the average wait time is 5.3 years and Illinois I should say ranks number 48 in the United States in intellectual disability services and our wait times for services are quite impressive. So let me say a little bit about the specifics of fragile X syndrome I think one of the challenges that we have in intellectual disability is each of these conditions is quite different and actually within each condition there's tremendous heterogeneity and I think Americans have very positive views in many ways of people with intellectual disabilities but those views are often based on stereotypical images whether positive or not so positive coming from popular culture your life goes on a whole series of ways that we learn about people and fragile X is a particular condition it's actually the most common heritable condition that causes intellectual disability but it's also very rare in the lives of most people so there's an unwanted repeated sequence on the X chromosome and if you have enough of these unwanted repeats it methylates a key protein required for cognition if you have more than 200 repeats you're considered to have the full mutation most individuals with the full mutation are significantly living with disabilities if you have between 50 and 200 you're considered to be a pre-mutation carrier and about one in 150 women and one in 468 men are identified as pre-mutation carriers who have health conditions themselves and who also are face reproductive risks so if you are a full mutation carrier about one in 3,800 men have it most of whom 90 percent of whom have IQs below the age of about above below 70 and also some characteristic physical features and behaviors hand flapping palm biting shyness and some attention and sensory issues women also have fragile X syndrome but we men are the weaker sex because women have that extra X chromosome which which often moderates the symptoms about 25 percent of women with full mutation you know we'd be identified as intellectually disabled quite a few people with fragile X also satisfy a diagnostic criteria for autism spectrum disorders that's the cliff notes version of a very complex medical condition two things I should say about it that relate to the people that we talked to one is that it's very easily overlooked especially among girls and and and because it's a genetic condition that presents throughout the family constellation many of the families that we talked to had multiple people in the family who were affected in various ways by fragile X so in this respect it's different from sound from down syndrome for example because typically there's one individual that a family is caring for but you don't have multiple people so often in the same family with with such challenges I should say it's also very common for individuals to be diagnosed because they have a younger sibling who is diagnosed and so to several of the people that we talked to had multiple children with a full mutation 25 percent of boys and 39 percent of girls with a full mutation are diagnosed when a young when a younger sibling is so so in in 2014 and 15 we conducted two focus groups and a series of open-ended interviews with people we recruited participants from our focus group at an academic medical center in a fragile x clinic and we also recruited individuals for for individual interviews from the clinic but also from a parent listserv and a facebook group now I should say the title of my talk referred to gender and socioeconomic disparities it did not refer to race ethnic disparities and when I show you who we interviewed you'll see why there's a remarkable skew in who joins these social media groups and participates in surveys at least as we experienced it so of the people that we interviewed 35 of 40 people filling out our survey were women mostly they were the moms of people who were living with fragile x syndrome 35 were Caucasian out of out of 39 who identified ethnicity so one of the disappointing aspects of this particular study is we did a poor job of of achieving a race ethnic diversity in our sample most of the people with fragile x syndrome who the caregivers were were caring for were young men usually in their 20s although some were older most were living at home although some were living in group homes or other arrangements and you'll see you know of the 39 people who filled out this complete survey you'll act if you count up the number of individuals you'll get you'll get 46 because some of them had multiple children that they were caring for so one of the most poignant things that we learned about in this survey were the prevalence of safety issues and you know I'm a caregiver myself but I never had this particular issue a third of the parents in a national survey of fragile x syndrome caregivers reported being injured by their sons and most of the time if that happened it was a repeated experience and many of the women that we talked to described how how much of their lives was governed around avoiding triggers among their that their child might experience that would lead their child to become aggressive so I know a common conversation was I know all the things that set him off and I sort of avoid I I know not to touch him at breakfast and things like that and you know he's not aggressive or violent just for the sake of it I know what triggers it I spend the majority of my days working around knowing how to prevent something like that from happening and you have these middle aged women who are living with these 25 year old men where there's a genuine safety issue that these women are facing there was one woman who described how her son accidentally pushed her down the stairs and broke her rib and punctured her lung and she remained very wary of sending him to a residential placement and there were a couple reasons why she was wary one was she said you know the places that I really would want to send him won't take him because of these behaviors and the places that will take him have other young men with the same behaviors and I'm scared to send them there you know if I'm setting him off because I touch him what's going to happen if he's with a 23 year old man who's got his own issues and it was striking how many of the women said as long as it's directed at me I'm basic I can live with it if he starts directing at other people he can't be in my home anymore but as long as it's just with me I can learn how to manage and that was quite striking oh sorry there I don't know how to operate a clicker even though I have a PhD from Harvard another thing that we found was there was a real mismatch between the life course of the caregivers and the individuals they were caring for and the available services a lot of people said you know when my son was in school I got an amazing amount of services but unfortunately a lot of these services are organized around this normative transition from high school out of the home something like that when my son was no longer of school age and he had really important life transitions I was in this different adult system that's much more rationed and I couldn't get the help that he needed and I don't have time to talk about it today but a lot of things that are very easily provided to a 17 year old are very hard to get for a 26 year old and and also the caregivers themselves have a lot of life transitions that our helping systems are not even recognizing as important you know the systems are designed around the need of the individual with the diagnosis but the need of the person taking care of that individual is not considered to be a primary mission of many of these helping systems so you have these women who change jobs or retire or get divorced or taking care of another family member and they need help and that is not recognized in the same way that the needs of the person that they're helping are recognized within administrative systems and so that leaves these women bearing the burdens of that. Another issue that comes up is I was thinking about the pension question before my ears perked up I'm very interested in behavioral economics many of the caregivers that we talked to don't have a plan for the same reasons that that many of us are not contributing enough to our 401ks it's like I definitely know it's a problem getting it around to it but right now I'm trying to prevent my son from like hitting me at breakfast and you're like asking me why I haven't like gone and filled out a special needs trust like I'm gonna get to it sometime and a sort of behavioral inertia there were a number of people when we asked questions and they got very nervous because they said hey I know this is a problem and my plan is basically someday I'm gonna have a plan and and I and we can all relate to that and there was tremendous fear of what would happen and I thought this quote our motto is to live one day longer than our kid just just one more day that's the we heard a lot of comments of that nature only 10 of the 39 people that we could get complete surveys for had had a full concrete plan for legal guardianship housing and financial planning for their child and the choice architecture that people are confronted with makes this much harder I don't how many of you have seen them send out Malanathan has this book scarcity about how hard it is for low-income people to make financial decisions given the cognitive loads that they face navigating the world every day and so much of the the world that caregivers live in is like this where they're in a world where they're on long waiting lists where there's crisis-oriented resource allocation that really demotivates and de-incentivizes people to do sensible planning so you know I could visit a group home for my child but they're not going to have an opening in that I can't get in there right now because I'm like seven years and you know out in the waiting list so why should I go look at a place where I can't really get access to it now and what will actually happen is someday I'll be in a crisis and I'll have to take whatever's available in that moment and so it's very hard to focus on making a sensible transition plan for that 63-year-old mom who's thinking about what happens now ironically a lot about the system generates disparities so I'll just say a few things about gender disparities and then get to socioeconomic many of many of the people that we talked to were moving in and out of the workforce and what's happening over time is that these women realize that if their children are really going to get the care they need they have to spend more and more time out of the workforce doing stuff or taking jobs that are consistent with family caregiving and incrementally that shapes their lives more than they might have intended when they were 30 so you know people are just realizing if I want to have a high functioning child I'm going I'm the person who's going to have to do it we also saw no surprise here dramatically unequal family division of roles so my husband sort of relinquished that responsibility to me always citing me as the expert and so a lot of that has fallen on me and there's been a huge amount of resentment on my part thinking why am I the one doing all this now I shouldn't say many of the men are also sacrificing but it's often bringing in more money so that the family can make it work economically and they get this very gendered division of roles but there was tremendous tremendous sense from women sometimes just a matter of fact way sometimes in a more angry way that that they know they're the ones who are doing it many of these women are also taking care of their parents or other relatives sometimes other people with fragile x syndrome so typical quote I'm my mother is 80 and my dad is 81 he's failing very fast and the the awkward question comes up what about their own children and what role are they going to play caring for a disabled sibling and there's a tremendous reluctance to put this burden on their children most of the people that we talked to don't want their non-disabled child to take their disabled child into their home but they do want that person to play a certain role in making sure that things are done well and it's the daughters who end up really doing that and and you and they become they become groomed to take on some of the responsibilities that their mothers are doing now let me speak to the economic disparities we have a crisis and need oriented service rationing system but if you think about it crisis and need are not self-defining they are words that are defined their administrative categories that are defined within a narrative that you have to present to a bureaucracy and it's a pretty complex bureaucracy and bureaucratic complexity rewards people who are good at dealing with bureaucratic complexity and who is it that has the resources and the skills and the education and the access to help to to make those most convincing narratives it turns out it's very often parents who are more advantaged who have access to the resources who can hire professionals to navigate difficult systems who can prepare persuasive paperwork and just strategically engage the bureaucracy and many of the we also found that what public school your child attended mattered a lot also a lot of the nice public schools up in the northern suburbs of chicago have tremendous programs for individuals with intellectual disabilities and they help a lot of the parents get connected to good systems and parents that were going to less affluent communities for their public schooling had access to much inferior services in that way and of course also wealthier parents are less reliant on public services because they can pay for services if they have to wait for them so one of the ironic things occurred in a focus group where our most affluent respondent our most affluent respondent was giving advice to one of our least affluent respondents where someone called our least affluent respondent and said are you in crisis and the person said no I'm not in crisis but you know my 19 year old son is in a diaper and I could use some help around my house with some stuff and this and this other person said that's the wrong answer you have to say I am in crisis I'm my marriage is falling apart I'm going to take my son down to the emergency room and because I can't take it anymore that's what you have to say so that you can get services and she said and she said I had to learn how to be in crisis you have the worst crisis day you've ever had in your own mind someone told me how to be in crisis and I was in a crisis and she by the way this is she was trying to help this other person she was saying this is what you have to do to elicit services but it was just so ironic that this other parent who was less advantage took great pride in not being in crisis I'm taking care of my son and doing a good job and if you look at some of the innovations that we put in policy to try to help parents they are often designed for the grooves of an upper middle class life so able accounts are a way to try to help parents set aside money for their child that avoids medicaid asset tests and they're very much like college accounts that many of us have a 529 account and of course that very sentence that I just spoke illustrates the class bias that's involved if you are a cashier at target you probably don't know what a 529 account is and you probably don't have a 401k and if someone says you can open an able account your reaction is probably well wtf is that you know and um and um now imagine that we did it differently and the government set up your own able account for you and just put in a modest amount every month make 25 or 50 dollars these are people for whom the state governments are spending a huge amount of money we could actually change that so that instead of being an opt instead of being an opt-in thing that requires after you to put up some money and figure out how to engage the system that government does this for you we have a lot more parents involved and we don't think about how to reduce that disparity and bureaucratic complexity and um so uh if I can say more about that if people are interested I'll just close by saying that we've done a great job of uh deinstitutionalizing people and removing the institutional bias in where people live who have disabilities and helping people live in their own communities but we have not done a good job in changing the institutional mindset and we have and the Faustian bargain that we've struck is that we have really put on the moms mainly of many people with intellectual disabilities the burdens of making uh a real life for people you know work in a humane way and it's taking a big toll on these women and it's one it's a very quiet burden that we often don't think about so with that I'll stop and thank you very much