NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Raising a family can be difficult at times, but parents with disabilities face additional challenges. A new study from the National Council on Disability finds they face discrimination at any number of levels. They are much more likely to lose custody of their children. They are more often denied adoption, and women with disabilities may be denied fertility treatments.
Authors of the report argue that parents with disabilities don't get the legal protection or support they need, but there are cases where removing a child from a parent's custody may be the only option.
If you have personal insight as a child, as a social worker or as a parent with a disability, call and tell us your story, our phone number 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later in the program, Robert Lipsyte on the legacy of baseball union chief Marvin Miller. But we begin with Ella Callow, a lawyer who works with parents with disabilities and their families. She joins us now from a studio in Berkeley, California. Good to have you with us today.
ELLA CALLOW: Hi Neal, thank you for having me.
CONAN: And reports like this one, instructive but necessarily about broad strokes. Can you tell us about one family and what happened that kind of encapsulates these findings?
CALLOW: Yeah absolutely. This report is really - you know, I say it's more like a compendium. It has so many examples and so many families. But I think that one family that I've worked with for a number of years sort of from the beginning of the process through hopefully soon completion really encapsulates the issue for me.
These are two parents who both have intellectual disabilities and are in a Midwestern area where there are not a great deal of resources available to them as people with disabilities. However, their child was removed from them at birth, basically, or just soon thereafter.
There was no abuse, there was no neglect, there was simply speculation that based on their disability and, you know, based on their IQ that they would be unfit to parent at some point, that their disability in and of itself posed a danger to their infant child.
I those are the most troubling types of cases because the people making the decisions often are not terrible well-versed in parenting with a disability. They don't know, for example, that we have 20 years of research that shows that IQ is not predictive of parenting capacity in and of itself, and yet IQ testing is heavily relied on quite frequently to justify removals.
This family went to great efforts with support people to reach out and find resources. They contacted us, and we were able to ourselves - you cold-call universities in the state and find a psychologist who had familiarity with this population. She came, did a full assessment, came up with an excellent plan to safely reunify the child with her family over time.
And the plan was refused. The state refused to pick it up. They really didn't want to deal with it, didn't want to engage it. They just saw the alternative of this child remaining with her foster parent or being adopted as superior as an option to returning to her family.
They moved forward to have the parents' rights terminated. Fortunately in this particular state, and very unusually child welfare cases are heard by juries. And so the jury found that the state had not met its obligation and had to try to work the plan or try to work with the family towards reunification, and they're still in that process at this point.
We, you know, were unable to trigger findings by either Health and Human Services or involvement by the Department of Justice in the case. The Department of Justice doesn't have the clearest jurisdiction over these types of issues, that's Health and Human Services. But we were never able to get anyone to really find that this was discrimination.
And that's sort of the problem, that after 25 years of working on this issue, very clear legal constitutional strategies to question the laws that make removal so easy has not emerged.
CONAN: This goes state by state, and you were talking about parents with cognitive disabilities. How old is the child now?
CALLOW: She's four years old, and they've been in contact with her, and she is in their area, and they're lucky because in many of these cases, the children, they really have no contact, or they're moved quite a distance out of either necessity, there's no one locally, or because the child - and many children in the child welfare system have disabilities themselves.
The child needs some sort of special care, and so they're removed to a further location.
CONAN: Joining us now is Robyn Powell, who is an attorney advisor at the National Council on Disability and co-author of the study "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children," joins us from Cambridge, Massachusetts. Good of you to be with us today.
ROBYN POWELL: Thank you for having me.
CONAN: And we're talking not just about people with cognitive disabilities but people with physical disabilities, too.
POWELL: Absolutely. This covers people with varying disabilities: people who are blind, people who are deaf, people who have psychiatric disabilities, people who have mobility disabilities. It's an issue across disability.
CONAN: And as I'm sure you know better than I do, some of those people would say wait a minute, we don't have disabilities.
POWELL: Oh absolutely, and so the estimates that currently 4.1 million disabled parents exist in the United States is certainly an underestimate, by and far.
CONAN: And you'll forgive me, but why isn't this covered under the Americans With Disabilities Act?
POWELL: Well, that's an interesting question, and in the report, we argue that it is. Here we are 22 years after the passage of the ADA, and we have state laws that state that disability can be ground for termination of parental rights. I believe, the National Council on Disability believes, that this is in clear violation of the ADA.
CONAN: And I guess that remains to be - you remain to find a judge that will agree with you.
POWELL: Absolutely, and unfortunately it's probably going to have to go to the Supreme Court to have that decided.
CONAN: In the meantime, we have stories like these, and the story that Ella Callow was telling us, that can be replicated for people who are blind, for people who are deaf.
POWELL: Yes absolutely. In Missouri back in 2010, we had a blind couple who lost custody of their child two days after she was born simply because a nurse oversaw that the mother was having trouble breastfeeding, which many new mothers do, and she reported it to Social Services that she thought that these parents were going to be unfit because they were blind.
The couple then had to endure a long fight. It was 57 days of not having their newborn with them. So this happens often, and it happens, again, across all disabilities.
CONAN: Let's get some callers in on the conversation. We want to hear from those of you with insight into this, as parents with disabilities, as children of those parents or social workers yourselves, 800-989-8255. Email us, talk@npr.org. And Scott's(ph) on the line with us from Pleasant Hill in California.
SCOTT: Yeah Neal, thank you for taking the call. I can't believe how timely this is. My name is Scott, and I graduated Yale in '91, and I have no cognitive problems, but I've had Hodgkin's lymphoma four times. I was a Wall Street whistleblower, and currently I'm in - I spent about $40,000 that I don't have, I'm permanently disabled, from bone marrow transplant, toxic treatments, et cetera.
But I'm OK now, and my twin daughters that we had through fertility treatments are about to be ruled through a public mediator that spent - went way over the allocated two-hour time limit. She spent four hours with us, but the entire - and I really try to be accurate with my statements - the - almost the entire four hours was spent where the mother of our girls and the court mediator, who is I think a social worker, a licensed clinical social worker, were on the offensive, asking me as sweat was pouring down my face because - and I was wearing a jacket and tie, and I tried so hard - that what was my team to support me.
And then, you know, as far as if I couldn't walk that day, and I can get through taking care of my girls on a day or two, and I'll rest on the third when they go back to their mom, that wasn't even an issue. The mom painted a picture that wasn't accurate.
And then finally, and I'll try to be brief here, when the report came out, the judge even said that after reading the mediator's report, which they accept because of the caseloads, they accept about nine out of 10, and the lawyer in Berkeley can correct me, but about 90 percent are accepted by the judges almost verbatim because they have to look at other factors in the divorce, separation case.
The judge ruled that this - it looked like a reunification plan, as if I were a felon getting out of jail after five years. And I just, I was shaking in the courtroom. I couldn't believe what I was hearing. So but anyway, I'm still about to lose custody, and I'll need supervised visits, and I'm a perfectly capable father and want to be.
CONAN: Ella Callow, there are divorce cases, it would seem, and child custody cases stemming from them, I guess just on the basis of the statistics, there's a lot of people in Scott's situation.
CALLOW: Wow yeah, Scott brought up so many issues, and first of all, I'm so sorry for him that he's dealing with this. It's so difficult to be going through a custody battle in and of itself and then facing sort of discriminatory treatment at the same time is - just makes it unbearable for many people.
A couple of things he mentioned, you know, I would like to speak to. One yes, this is very common. And what people don't realize is that while termination of parental rights, the jurisprudence involves the 14th Amendment, and so there's a bit of a higher standard for the state to remove a child, that they have to show theoretically that a parent is unfit.
In family law cases, the standard is much lower. It's the best interest of the child standard, and you're not having the state intervene and take a child, it's between two equally situated parents. So these parents sometimes face an even greater uphill battle, and they have no right to counsel, whereas in most termination of parental rights, child welfare cases, they do have counsel, even if they're overwhelmed counsel.
The second thing is that he's correct. Mediators are - the decisions of mediators on custody are followed in the state of California, where he's located, upwards of 90 percent of the time. So if you lose in mediation, you're going to have a very difficult time moving the case in the other direction. And social workers, and I have a social welfare degree from UC Berkeley, and there are wonderful social workers out there, but I'll tell you that in my training and my experience, they don't get much education on this topic despite the high number of parents they will encounter, especially if they're working in child welfare.
But in either family or child welfare courts, they will be dealing with parental disability, and they're not provided the education around what are best practices of these parents, what are assumptions and attitudinal biases you need to be aware of when working with them, when do you need to reach out for consultation or put into your reports that you don't have expertise in this area. So it is problematic.
CONAN: And he also mentioned that his wife, or ex-wife I guess, was misrepresenting the facts, and obviously we don't know the facts in this particular case, but that's hardly unusual in some - in divorce cases.
CALLOW: Yeah, it's - you know, I think we all understand as a society that it's a time no one plans to be in, and emotions run very high, and everything tends to look more awful, and so paint worse pictures of one another, and disability can be mud they throw at the wall, seeing if it sticks.
CONAN: Scott, thank you very much for the call, and we're sorry for your situation. We hope things work out.
SCOTT: How can I get a transcript? Thank you, Neal.
CONAN: Go to npr.org after the show is off the air, and we can help you out with that. Scott joined us from Pleasantville - Pleasant Hill, California. Stay with us. We're talking about the rights of parents with disabilities. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. A new study from the National Council on Disability estimates that more than six million children in the U.S. have parents with disabilities, and those with psychiatric or intellectual disabilities lose custody of their children at an incredible rate, as much as 80 percent of the time.
Clearly there are some cases where removing a child is necessary for the child's health and safety, but the report's authors believe that's not the story here, that discrimination is at the root of these numbers. The Americans With Disabilities Act is supposed to protect those parents, but the report finds it's not working out that way.
If this is your story, if you've been part of it as a child, a social worker or a parent, we'd like to hear from you, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Robyn Powell, co-author of the National Council on Disability study, and Ella Callow of the National Center for Parents with Disabilities and Their Families, are our guests. And let's see if we can get another call in. This is Leila(ph), Leila with us from Spring Harbor in Michigan.
LEILA: Hi.
CONAN: Hi.
LEILA: Hi, Neal.
CONAN: Go ahead, please.
LEILA: Well, I'm a licensed clinical social worker, and I actually practice in Indiana, and I'm really proud of our state. I don't feel at all like we discriminate individuals with disabilities. I've worked with, you know, parents on both ends of the spectrum where I felt like I was placed in a home where it wasn't safe, and we made every attempt to unify the parent with the children.
And then on the other end I've had a quadriplegic, you know, family that wants to have children, and we've helped to facilitate adoption to make that possible for that family. One family in particular where it was unfortunate, you know, we had two parents with intellectual disabilities, and the mom kept having multiple miscarriages, she didn't know she was pregnant.
When I actually came into the home to work with the family and provide wraparound services, I mean she had a five-year-old, a three-year-old, a one-year-old, and then she had twins. She didn't know she was pregnant, ended up actually losing one of the twins and the other baby was a high medical needs situation.
So I feel like - I don't know what states this study included, but I feel in Indiana we really try to make every effort to provide services to families with special needs.
CONAN: And that decisions are made on a case-by-case basis and not reflexively saying if you've got disabilities, you're disqualified.
LEILA: Absolutely, and we have great judges in our community that really work hard to make it possible to give supports to these types of families. But again, you know, in all reality it's been my experience when you have families with some medical issues or high special needs, oftentimes the children have high special needs that require, you know, extra services that maybe some parents aren't able to provide.
And if they don't have family support, there has to be an alternative plan.
CONAN: Robyn Powell, did you look at Indiana?
POWELL: We looked across the country, and in our report we do show that over two-thirds of the states in the United States, their child welfare laws allow courts to reach the determination that a parent is unfit on the basis of the parent's disability. I'm not sure at the moment whether Indiana is one of those states.
CALLOW: Indiana is not.
POWELL: Indiana is not. Okay.
CALLOW: No, so that is a difference.
POWELL: Right, absolutely, as Ella said, it's absolutely the difference there.
CONAN: Well, Leila, thanks very much for the call.
LEILA: ...to Indiana and see what we're doing different.
CONAN: Thank you very much.
CALLOW: You know, and I also want to add that, you know, she touched on something really important, which is that families where the parents have greater needs themselves, sometimes the children do as well. The problem is that because the discrimination has been so incredibly pervasive over so many decades, and these parents face so much discrimination in their day-to-day lives, they're often fearful of reaching out for any help because they understand that it renders them overexposed.
And once they become involved with that system, they don't trust that their disability will not be used as something that grounds a removal as opposed to something that secures services for them. And that's very frightening to us.
CONAN: Joining us now is Linda Spears, vice president of policy and public affairs at the Child Welfare League of America, joining us from her home in Upper Marlboro, Maryland. Thanks very much for being with us.
LINDA SPEARS: Good afternoon, thank you, Neal.
CONAN: And I knew these stories speak powerfully to you. I'm sure you have experience where these are awful decisions, sometimes difficult to make.
SPEARS: They are difficult decisions to make, and I think that there are a variety of factors that contribute and that say that I think everyone is right in this scenario, that there are lots of good workers out there trying to do the right thing, and at the same time there is an awful lot of discrimination and bias.
And I would differentiate between bias at the worker level and bias at the systemic level that affects these families, and I think even when workers try hard, there's often bias at the systemic level - a lack of resources targeted to these families, a lack of policy that supports getting families preventive services before a child welfare intervention is needed.
The nation is replete with a lack of prevention and early intervention services for all kinds of families in the child welfare system. But I think that the impact on very vulnerable adults with disabilities, children with disabilities, can be very disproportionate. So it's a complicated question.
CONAN: You raise an interesting point, though, about resources. There are situations where either through interventions of one sort of another, early intervention, as you mentioned, but also either physical or having somebody come by the house every once in a while, where that might make it possible for people to keep their children.
SPEARS: Uh-huh. Uh-huh. I mean we've - you know, exactly. I look at the system - I have elderly parents. I look at the system we have in our country, which is woefully inadequate but still exists, that provides elderly folks with in-home aid, with support services, where the variety of things to enable them to maintain their independent functioning for as long as they are health-wise able to.
We don't have such a thing for people with disabilities who are parenting. We may have some things for them as disabled individuals that function well, but as parents, in their role as parents, there's not a lot out there that really targets this population of families, provides them with supports so that they're not at risk of getting into trouble and so that they're not afraid to go and access the service, as Robyn just mentioned.
Families are often fearful to go to the child welfare system for preventive or early intervention services, and that's with good reason. The child welfare system is designed in a way that is really oriented towards punitive measures, toward deficit functioning. Many child welfare systems are trying to switch that orientation, but we have a statutory framework in this country that says failing to parent gets you support and not desiring to parent.
CONAN: That's interesting.
SPEARS: And I think that's a really fundamental problem in the way that we provide our services. Now, that said, we don't want, you know, sort of a policy and government overreach in the families' lives. But at the same time, when families struggle, when families need support and don't have any place to go, and then you set up an intervention so that it punishes them for seeking or needing help, it seems unreasonable.
CONAN: Here's - I just wanted to get to this email from Diane(ph) in Battle Creek in Michigan: My husband's aunt is intellectually challenged and is married to a man also intellectually challenged. They both hold jobs and own their home. Before they got married, however, my husband's grandmother, the mother of the aunt, had her daughter, the aunt, sterilized so she could not have any children.
The rationale was the couple would not have been able to care for the child. And Ella Callow, does that sort of thing go on?
CALLOW: Yeah, I mean we have 100 years of really bad policy around parenting with this population, sadly. You know, sterilization, which render people physically unable to have children, and institutionalization, which segregated them out of society so they didn't have opportunity to become parents, were the way this population was dealt with.
Eugenics is based largely on concerns that they would reproduce and that it would be bad for children and bad for society. After de-institutionalization and this sort of - the disability self-determination movement, disability rights movement, they went out into the world and the mantra became not it's bad for society but it's bad for children, for them to have children.
And there are still states with laws on the book that allow for sterilization, though it's very few, and it's through judicial process at this point. But people are talked into it. And I think, you know, Robyn can speak to the issue that women with disabilities face when they're interfacing with the medical community, the assumptions that are made about whether they should have children and what are the proper choices for them.
CONAN: And Robyn, I wanted to ask you particularly about fertility treatments.
POWELL: Absolutely, well, first back to what Ella had mentioned. I'm a woman with a physical disability, and I can't tell you how many times I've been offered a hysterectomy.
So it was not even through just sterilization, through traditional systems. But every time I go to the doctors, they suggest that for me. I don't have a medical reason to have one. I'm only 31 years old. I'd like to have children. And so there is this belief among society - and the health care profession, as well - that people with disabilities do not want to have children or cannot - want - have children, and so that carries on to the fertility treatment. Providers of assisted reproductive technologies are often discriminating against prospective parents who have disabilities based solely on their presumption that this individual should not have a child.
CONAN: Let's see if we get another caller in. This is Rachel, Rachel with us from Hampton in South Dakota.
RACHEL: Yes. Thank you. I'm coming from being a children's advocate in the hospital setting. I'm actually a child life specialist, which is not the same as a social worker. We work with children and families to promote ideal development, and also to try and prevent unnecessary stress and trauma and to facilitate coping for families. However, often, I came across - I don't want to say battles, but maybe a battle of wills with sometimes social work staff, sometimes physicians, when they would realize that one of the kids - when a child was sent home, and perhaps they were being sent home with a medication regimen, or if they had a chronic illness, that when the parents were illiterate, that meant they were unable to care for their children.
CONAN: Illiterate?
RACHEL: And I thought...
POWELL: Yeah.
RACHEL: Yes. And I thought...
CONAN: There were several thousand, tens of thousands of years of human history where all parents were illiterate.
(LAUGHTER)
RACHEL: Well, that's...
POWELL: Right.
RACHEL: ...the whole thing, and I would then - you know, well, they have to give the medicine and they have to give it at the right time. And I, you know, constantly set up charts and show them how I - you know, we can make a chart, and this parent - you know, these parents would show unbelievable care for their children in the hospital. And then suddenly, it was, oh, my gosh. This mom can't read, and this kid has sickle cell disease. Well, this kid has been coming to us for 12 years, and no one's ever noticed that before? Because I know I've made charts for her for 10 years.
And so it's been really - that, to me, was one of the things that was most difficult, is when kids come into the hospital, people haven't recognize it or acknowledge it or had a problem with it yet. But if some child came in, let's say, because she had a serious infection and said she had to go home on an antibiotic regimen, or maybe a parent had to be taught how to clean a child's central line, but these parents showed all of - they were doing all of that in the hospital. And then we would get recommendations that, you know, perhaps this child should go to foster care because for whatever reason, whatever the disability be - and I'd tell you illiteracy is a big one. But that, you know, they just may not be able to do this, even though they've proven themselves. And so fortunately, I am a strong will and...
(LAUGHTER)
CONAN: Sounds like it.
CALLOW: Yeah.
RACHEL: ...and a very strong advocate because most of the time, I was able to prove that, no, I think we're absolutely wrong and documenting them. You have to document, document, document in the hospital what you've seen this parent do so that people know, because that's the other thing. When people come in and parents are - who had disabilities and they're noticeable, instantly, they are labeled by many people in a hospital setting.
CALLOW: Yup.
RACHEL: And right away, discharge to foster care is being considered from almost the day they come into the hospital.
CONAN: Rachel, thank you very much. That's an alarming story...
RACHEL: Yeah.
CONAN: ...but thank you.
(LAUGHTER)
RACHEL: It is, but it's something for people to be aware and to help these parents.
CONAN: Thank you again. We're talking...
CALLOW: You know - I'm sorry, Neal. I just wanted to interject. You know, between the first caller, Neal, who's in our area didn't contact us, and Rachel who's out there fighting battles in South Dakota on her own, I do want to mention that the National Center, which I direct legal programs for, is Through the Looking Glass. Our agency, we're a local agency in Berkeley. We serve about 400 families a year doing preventative services, assessments of parents so that we have generated evidence that parents can or cannot safely parent.
We work with children with disabilities, as well. And, you know, if people like Rachel feel like they're isolated and they want some help, we have free legal technical assistance and, you know, can provide a lot of information to them, and people like, Neal, you know, contact us.
CONAN: Ella Callow is legal program director at the National Center for Parents with Disabilities. Also with us, Robyn Powell, attorney adviser at the National Council on Disability, and Linda Spears, vice president of policy and public affairs at the Child Welfare League of America. You're listening to TALK OF THE NATION, from NPR News. And, Robyn Powell, let me turn back to you for a moment. Is inability to read defined as a disability?
POWELL: It can be, actually, yes. If it is really to an intellectual disability, I undoubtedly think it could be. And it's that - what she brought up is a huge issue. When parents with disabilities bring their children either into the hospital or even to the pediatrician, they're facing health care providers that have these biases. We spoke with parents who had their child's pediatrician report them to child welfare for no reason. The investigation was completely unfounded, but they believe it was really to their disability.
And again, this is happening often, and this is a detriment not only to the parent, but it's a detriment to the child. It's very stressful to have your parents being investigated. It has huge cost to both the parent and the child.
CONAN: There is another, I guess, definition of disability. To include the deaf would be - many would find offensive. They have, obviously, their own language, their own culture. This is an entire community.
POWELL: Yes. That's a great point, and some deaf folks do not consider themselves disabled. Nonetheless, we did talk with many deaf parents when we were writing this report, and they have similar issues. They've also encountered bias and discrimination within the child welfare system, where they bring up language issues. They state that the children are not learning a language because sign language is their first language at home. And so the deaf community is experiencing similar issues, absolutely.
CONAN: And we're talking about legal recourse on the federal level, or is this going to be a battle that worked out state by state?
POWELL: Well, I think it's going to have to involve both state level and federal level mediation. We really need to change the law federally. I mean, it's certainly the best and most comprehensive way to approach this. But nonetheless, states need to also look at their child welfare centers, look at their family law statutes and change how disability is included - remove disability as a ground for termination of parental rights. In our report, we offer model legislation, which we urge both the states and the national government to really adopt as soon as possible, urging Congress to look at this issue, similarly to how they looked at the Indian Child Welfare Act. When that was adopted, that was adopted because Native American families were encountering similar barriers.
CONAN: Robyn Powell, coauthor of the study "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children." Thank you very much for your time.
POWELL: Thank you.
CONAN: Ella Callow, thank you for your time, as well.
CALLOW: Thank you, Neal.
CONAN: And we'd also like to thank Linda Spears of the policy and Public Affairs Center at the Child Welfare League of America. Coming up next: the legacy of Marvin Miller. This is NPR News. Transcript provided by NPR, Copyright NPR.