Transcript for Episode 47: Parents Under Pressure

Greg Wright:
Welcome to Social Work Talks, I'm Greg Wright. One in six children in America live in poverty and almost 3 million American children live with a disability. What can social workers do to help parents of these vulnerable children? Today we are talking with NASW member Karen Zilberstein. She is author of the book, "Parents Under Pressure: Struggling to Raise Children in an Unequal America." Welcome to Social Work Talks, Karen.

Karen Zilberstein:
Thank you for having me.

Greg Wright:
Absolutely. You actually work with families where there is a child who may have a disability or a mental health issue. How did you get interested in this population?

Karen Zilberstein:
Well, I went into social work because I was interested in what could be done to help people improve their lives. And I've always liked children and I've always been interested in the people who are struggling the most. And I went into actually a clinical work because I'm primarily a psychotherapist because I wanted to learn from the ground up from my clients and hear what they needed with an eye to eventually leverage into systemic change. My focus has always been on community health and underserved populations.

Greg Wright:
Why are these families so marginalized? Why are they hidden?

Karen Zilberstein:
They're marginalized because the burdens of care that they have are so great that it actually stops them from being able to participate in a lot of normal activities. They're spending a lot of time, energy, money, caring for their children. Their children don't necessarily fit into normal activities and recreational activities, so they're constrained actually from participating in some of the same places, events that would give them the support they need. It's a combination of lack of time, the cost and the lack of opportunities in society for them.

Greg Wright:
Are social workers trained in ways to actually help these parents?

Karen Zilberstein:
I don't think they are enough. I think unfortunately what's happened in the field is that we've got somewhat rigid and we have theories and services with rigid streams of funding and a family has to fit into them, rather than us being able to fit our interventions to the family. Unless they have the right diagnosis, unless their insurance pays for it, they can't necessarily get everything that they need. Or we've become so decentralized that they have to get it from 10 different places, which has also exhausting. We've never organized a system of care that's going to make it easy for them in one stop shopping to get what they need and that's actually adding to their burdens. And I've had families refuse services that they might benefit from because they just can't coordinate another one. Do more paperwork, go to more meetings.

Greg Wright:
These families are so busy looking after day to day needs. How can a social worker reach them?

Karen Zilberstein:
Well, we often are reaching them, we're just not reaching them as fully as we'd like to. They are arriving for services at IEP meetings at schools or they're coming to psychotherapy. And too often a psychotherapist looks at the family and says, "Well, let me help you learn how to take care of your child." And they don't have an eye to what the parent needs to have the resources they need to do that. I think it's more these families are presenting for services, but they're not getting the breadth and depth of services that they need.

Greg Wright:
If I'm a parent, I was wondering if there's any advice that you could offer them? How to actually find I'm a social worker for instance, who's able to help them.

Karen Zilberstein:
I think they first of all have to be clear about what they need and who they feel comfortable with and keep looking. You go to a therapist or a social worker and you don't need to end up there and you don't need to give up if the first one doesn't work out. There does need to be a good fit, there needs to be somebody who understands your family and needs and who is going to listen to you and help you prioritize and help see the whole picture and not just focus on one aspect of it. If they can get to a support group for other parents, they can hear from other parents who they've gone to. If they can get a recommendation from the pediatrician or from a school counselor who they may trust, those professionals also have contact with a lot of different people and might have some recommendations for them.

Greg Wright:
If you are a parent that's a bit more affluent, finding such services are easier. How is it that we're able to equalize the playing field out there if you are a parent of a child who has a disability of some sort?

Karen Zilberstein:
Yeah, and that's a really big concern of me that the field is actually exacerbating inequality. By the way, there's better resources in richer schools where the wealthier parents are, that increasingly social workers with experience are going into private practice, which means that these families are often presenting at community mental health centers where they're getting the least experienced therapists and the ones who are turning over. I think that we really have to expand our services and our training and make this more part of the curriculum.

We also need to make it easier to get services, so right now it takes a lot of experience to know all the different resources that are out there, both locally and nationally that a family might be able to access. In part, because it's not in any organized fashion. In a technological age, there should be an easy way of applying for services and getting a list of everything that you qualify for and that would help because social workers wouldn't need to know about everything. It would be available in a database for both families and social workers and we need to start thinking about what are some of the systemic changes we need to make this easier.

Greg Wright:
We are in an election year this year. Do you think that candidates out there are aware of...?

Karen Zilberstein:
They are paying attention to some parts of it, and I live in Massachusetts, so we're more progressive than some States. Certainly there's an understanding that access to good education isn't equal and good educational services. I'm not sure that there's the same recognition that access to mental health and social services are so unequal. Certainly some cities and States have a lot more resources than others and provide a lot more opportunities. In my state and I live in the rural part of the state, so we have an inequality in that Boston has a lot more resources and people in really rural areas sometimes don't have a therapist within 45 minutes of them that they can go do. And there is a Bill being introduced in the legislature right now to try to address that.

Greg Wright:
If you are a parent who is in an area where there aren't a lot of services. Have you ever advise a family to move to a place that might be in fact better for their child?

Karen Zilberstein:
I have sometimes advised them to try to get into a different school district. Moving is hard because the rural areas are cheaper to live in and they may not have the income to live in another spot. I certainly have researched myself a lot of lists of ways to get financial help, to get other sorts of concrete help that they might need and I try to match families up with that. And I even write letters, I do a lot of advocacy to try to get them these resources. There's also tele-health, but it's really not the same for kids who need to be physically with you and play with you and be involved. I have been on a few commissions that is looking at this issue and if there's a way to get more therapists out in rural areas and what it would take to attract them.

Greg Wright:
Yes.

Karen Zilberstein:
But, I think that a lot of this is a policy issue.

Greg Wright:
Yes, absolutely. I was wondering if you could give us an example of a family that you've helped?

Karen Zilberstein:
Yeah, I work with a lot of families who have special needs and they may have multiple needs. Often children with disabilities have multiple disabilities for instance, may have cerebral palsy, and with that there's physical challenges and on top of that there could be ADHD and some mental health issues that go along with it. These families who the physical care takes lot as well as the emotional and social care really need a lot of help. One of the things that I do is I don't just focus on what the child needs. I say to the parents, "How are you doing? And what do you need?" And it's interesting in this day and age, a lot of parents say, "Well, this isn't about me, it's about my child." And they're a little uncomfortable at first about talking about what they need to be able to have the energy and time to work with their children. Some of these children also aren't sleeping well, so the parents are very exhausted.

With one particular family, I arranged funding for them to get their child in some special programs, camp scholarships. I've hooked them up with mentors who could come and spend time free of charge. I coordinated with the school, even though the child didn't actually qualify for van service. I advocated with the school to get a van service for the child. I worked with the parents for them to really look at their support network and who could come in and give them a hand. Their family did not live nearby, but they did have friends and it turned out that a colleague offered an Airbnb to the parents once a week so that one parent at a time could just get away and recuperate for 24 hours. We tried to put in and think creatively about all the different resources that they could use, both financially and emotionally to help the parents as well as the kid.

Greg Wright:
You are actually providing individual one-on-one help but also advocating as well. That's a lot of hats for a social worker.

Karen Zilberstein:
It is a lot of hats, but the family has less time than I do.

Greg Wright:
Mm-hmm.

Karen Zilberstein:
We are also lucky in Massachusetts that MassHealth, which is our state insurance, which this family was on, does pay for case consultation work. If I call another agency to try to arrange services, I can bill for it. I would do it anyway, but it's certainly an added incentive. People who can access that, really I feel don't have an excuse for not taking some of this on for their families and it is much more powerful for them to get a letter or an advocacy from a social worker who is vouching for this family. It actually increases the likelihood that they'll get the funding or the service.

Greg Wright:
You are an author and your latest book is "Parents Under Pressure." Why did you decide to write their book, Karen?

Karen Zilberstein:
Well, I wrote the book because of families like the one that I described. I was feeling that the needs of the families who were coming to me for psychotherapy weren't adequately recognized or addressed by the theories and methods that we were asked to employ. I wanted to give these families a voice. I wanted to publicize their experiences, which included the difficulties they faced getting services. And I hope that the book will bring attention to how the structure of our social service systems replicate inequality and that it will help spark reforms and innovations that we badly need.

Greg Wright:
Are you hopeful that we, as a nation will actually make progress on this?

Karen Zilberstein:
I think it's a pretty big issue. I think some of our structures are very big and hard to reform, but I think there's a lot of little ways that we can change as individuals and as practitioners that can make a big difference for the families and that eventually there are some easy fixes that we can put in place that would help a lot, including using technology better and making services more accessible.

Greg Wright:
I was wondering if you wanted to delve into A Home Within. Is it at all related to the book and the other issues that you're working on?

Karen Zilberstein:
A Home Within tries to get the best services for a population that usually gets the worst services. Foster kids inevitably were the ones who were getting the practitioners with the least experience, who were just out of school. The community mental health service where there's turnover, people would work for two years, get their license and move on. The problem was that the system was replicating their experiences of loss and placement changes.

Greg Wright:
Yes, that is sad.

Karen Zilberstein:
A Home Within matches them up with private practitioners who aren't going to go anywhere and hope for a longterm relationship. It's pro bono because most of the foster children are on state insurance, and most private practitioners do not take state insurance.

Greg Wright:
Gotcha, gotcha.

Karen Zilberstein:
They were locked out of being able to have the experienced steady therapists.

Greg Wright:
Yeah.

Karen Zilberstein:
Therapists volunteer to take one client into their practice and to see them for years for as long as they need. This is a national nonprofit based in San Francisco and it's got chapters throughout the country. I head up the chapter in Northampton. We actually have 18 therapists who are volunteering and seeing clients and the therapists also meet in consultation groups. Every other week they meet with a senior person who consults with them on the cases. We're really making sure that the... And, it's not just children, it's adults who've been in foster care are really getting the best service, the most attention and their cases are being thought about and what they need is being thought about. We have in our chapter clients ranging from... The youngest was 18 months who was seen, to an adult who's 46 years old.

Greg Wright:
Oh wow. You are a super social worker. I mean, this is an issue with a lot of intersections. It's health care, policy, government, practice. It was just a lot. I want to thank you for giving us a little bit of your time. Thank you for being on Social Work Talks, Karen.

Karen Zilberstein:
Thank you so much.

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