SW 644: ISSUES IN DEVELOPMENTAL DISABILITIES
Discussion: The Children’s Long-Term Support System and Families’ Experiences
Liz Hecht
Interviewed by: Laura Birnbaum-Singler, MSW
Unit 1 – Issues in System Navigation
Issues in System Navigation
(Slide 1)
LAURA BIRNBAUM-SINGLER: My name is Laura Birnbaum-Singler, and I'm here with Liz Hecht to dig a little bit deeper into some of the content that she talked about regarding the regional centers, as well as the Children's Council. So thanks again for being here, Liz.
Issues in System Navigation
(Slide 2)
First I just had a quick question about the importance of a well-coordinated system and really the goal of having that be seamless for families to navigate. Can you tell is a little bit more about the different systems or the multiple systems that children with special health care needs and their families interact with?
LIZ HECHT: Sure. So kids, young children, might be participating, for example, in Birth to 3. And having some of their developmental educational needs met that way. Young children also would be participating in child care of one sort or another, so families as you just begin to think about it, so families have hopefully found or been referred to birth to three and they find that support system.
And then like most families with young children are trying to find child care, but it's much, much harder to find child care for kids with disabilities. So already families are beginning to sort of encounter barriers, as well as then needing to seek information that's different than what typical families would be looking for. So after the fourth child care my son was thrown out of, it really had an impact on my ability to work, my husband's ability to work, as it is for all families. Families really begin to start to need to navigate much more complex sources of information to find out what to do.
At the same time a family may have private health insurance, so as a child’s disability starts to manifest, the family may be starting to need to use things different than a typical family- a pediatrician might refer to specialists, might recommend certain types of intervention that have cost. And insurance companies may or may not pay for those things. So then families are beginning to try to figure out so how do we get health care needs met? With that might then come a family accessing the public and health insurance system.
So using Medicaid through one doorway or another. And so then they're navigating both private insurance and trying to get that to coordinate with public insurance and Medicaid and the two don't mesh very well together. And there's multiple, multiple steps.
So it just continues to grow from there where what families of kids with disabilities are trying to learn and navigate is so very more complex. From those early years kids go into school, and there's a separate process called Special Education for kids with disabilities that have writing plans, and those plans need to complement other supports that might be provided through the Medicaid or private insurance or child care. So it just goes on and on and on, the different systems.
And so you folks may have heard about programs such as Birth to 3, Family Support, children's waivers, Medicaid, Katie Beckett, BadgerCare. These are all sort of formal systems that families navigate. And then from there they're also trying to do the same things that other families do-- go to the playground, participate in the faith community, do the kind of recreational things that families like to do and trying to figure out how to still do those things.
LAURA BIRNBAUM-SINGLER: Right. Very complex.
LIZ HECHT: It gets very complex. Families have to become experts on a tremendous number of things.
Unit 2 – Access to Information
Access to Information
(Slide 3)
LAURA BIRNBAUM-SINGLER: OK. That kind of leads into another question I had. One of the main focuses I understand at Compass Wisconsin is access to information. So can you say more about where families do currently get support and access information about all of those programs and the different systems that you had talk about?
LIZ HECHT: And so what I described is sort of a description of a system that's not well coordinated. So families are just sort of bumping their way along and bumping into things that might be helpful and finding them by happenstance.
With Compass, one of our core design elements is a really clear place where families can get access to good quality information, can talk to a person who can be of assistance to them for as long as is needed with as many questions as they may have. One element of that is currently available with our Regional Centers for Children and Youth with Special Health Care Needs. The regional centers, families can call and talk to a person and get information.
One of the things that families have talked about in addition to that is the idea of a trusted person that can walk by their side. So someone who can really be there who knows the family and child, who could help them problem-solve on an ongoing basis. If on occasion the family really needs an advocate, someone who might go with them, for example, to an IEP meeting and then reflect back to the family what they heard at that meeting and offer suggestions about how the family might approach the team in the future.
So the regional centers provide a really important piece of it, and I think we want to continue to develop a really robust structure for information and assistance with expertise and disability for children and families. And I'll just say this idea of a person is a theme that families have talked about over time.
Access to Information
(Slide 4)
And the other ways families get information, they can get it from their doctor's office, potentially from their school. But I think all of these different partners have a piece, but not necessarily the whole picture.
Another great source of information for families are other families, whether it be families who have kids with a similar diagnosis or not. Families come together in a wide variety of different ways to support each other.
I know for me I found the Independent Living Centers when my son was really young and there weren't regional centers, a great place to get information about my son's disability and to meet adults who had a disability like his. So those are just a few examples of places where families might get information.
LAURA BIRNBAUM-SINGLER: OK. So the centers provide that family mentor support or family-to-family support. Do they also refer to other parent advocacy or support groups, like Family Voice as well? Is that another place?
LIZ HECHT: It really depends what families are looking for. So for example, Family Voices provides easily understood written materials for family. So in a sense tries to sort of interpret information about, for example, Medicaid, and re-writes it in ways that are family-friendly. Family Voices offers a really comprehensive training on community and health supports. So even by virtue of coming together for a training, families are meeting each other and supporting each other.
Some families are information-oriented, and so that's the way that they feel supported. Other families like the one-on-one contact they might have with another family similar to them. Other families like support groups, and those are organized by all different people in all different ways where groups of families come together over time.
So what each family finds supportive can be different. And I think certainly the regional centers can be helpful in trying to help make a connection to what's meaningful for a family.
Unit 3 – Family and System Partnership
Family and System Partnership
(Slide 5)
LAURA BIRNBAUM-SINGLER: Thank you. We've talked a lot about family focus and the role of parents, and I'm wondering if you can talk more about the concept of parent partnership and why you see this as important from a big picture view or even within your personal experience.
LIZ HECHT: Sure. So let me start with the big picture view. And really, one of the driving forces for forming the Children's Council was the idea that families live and breathe our systems every day. And see the problems, inconsistencies, and have great ideas for improvement. And I mean the bottom line is our support systems aren't there to administer programs, they're there to support families. And so we need to make sure that our programs actually do that in a way that's supportive. And one of the best ways to do that is to have families at the table with policymakers and providers and other advocates to have discussions about what those improvements might look like.
And oftentimes families are some of the first to hear or experience problems in our system. And I think families are also used to being really efficient and cost effective-- I don't know if families are cost effective. But families are really cost conscious. And so in managing family budgets, families bring those same kind of values in discussions about how to improve our public system and have great ideas about how to do that.
So I think having families at the table with decision-makers is absolutely critical so that we really do design systems that work. And we use our money most wisely.
And then at an individual level, I mean it's somewhat of the same principle. But one other comment about the Children's Council, I think one of the most unique things about it is the majority of the members are families. And if you look at typical committees in this area of work, that would be very unusual. You might have one or two consumers or family members, and then a lot of other folks who sort of administer programs or are funded to deliver services. So I think that that balance has been an incredibly powerful way for the council to function, and I think we've had great outcomes because of that.
Family and System Partnership
(Slide 6)
So then at an individual level, the idea is the same that families know better than anyone what the best solutions are for themselves. And so while we talked about a partnership with providers-- providers, professionals, bring expertise and information that I don't have to a discussion, and I want to know what they know and what their past experience has been because they've seen, for example, in my son's case, kids with Cerebral Palsy for many years. And I've seen mostly my son. I'm the expert on him, but they have a much bigger picture.
At the same time, solutions are going to be implemented by me, and my son is the one who's going to live with them. So they have to work for our family and for him. And that's where the partnership comes in. So there is usually more than one pathway and more than one answer to a question, and that answer is going to depend on a discussion that takes place as part of that partnership. And in the end what we can implement as a family, what fits with our preferences and our own family culture, and we're most likely to be able to benefit from.
LAURA BIRNBAUM-SINGLER: Thank you.
LIZ HECHT: And if we provide services in the absence of really meaningful discussions in that partnership, then I think it risks doing things that aren't needed, and using funding really inefficiently. And I certainly talk with families all the time where there's a real mismatch between the supports they've been offered and what they need.
LAURA BIRNBAUM-SINGLER: OK. And thanks a lot, you brought out the whole culture piece too, because I think that's a big piece that's very diverse across families and really important to remember when coming up with a plan.
Unit 4 – Working Principles and Values
Working Principles and Values
(Slide 7)
When you were talking about family carrying some of the challenges that the state is and families are currently dealing with. You mentioned the challenge of meshing of different values. I was wondering if you could kind of talk about, or at least you say what values you at least hope are maintained that you feel are important as we're undergoing this continual shift and change in this big system.
LIZ HECHT: So it certainly is part of just the Compass Wisconsin and the quality improvement initiatives for long-term supports for children. The council's developed a set of sort of working principles, and those are available on the department's website. But I think very broadly, they're the ideas that families are constant in a children's life, and families bring strengths and gifts to that child. And when I used to word child, even though my son isn't young, he's still and always will be, my child. So I use that term very broadly. It's children, young adults, and even adults from the families’ perspective, they're still our children.
And so the family is important, and we need to support that individual within the context of their family. At the same time communities are important and families within the context of community, so we want to be sure that we're supporting families and children with disabilities in the context of our communities. And that we are engaging communities and community partners all the time.
And then also that we want to make sure that as we provide supports to families, that that is enhancing the family's own capacities, and the families natural networks and natural supports that our support systems don't undermine those things, which can sometimes happen.
So I think that those are really important values, and I think it really comes down to values about families-- believing that families are the right place for kids. And believing that families bring strength to any partnership on behalf of their kids, and that they bring expertise, and treating them in that way and with respect in regard to those things.