Aliah Wright:
From the National Association of Social Workers, I'm your host, Aliah Wright, and this is Social Work Talks. Thank you so much for joining us for this episode which focuses on a recent study on the topic of disability awareness. We're here today with NASW member Dr. Paula Allen-Meares. Dr. Allen-Meares served as chancellor of the University of Illinois at Chicago from 2009 through 2018. She transitioned to the University of Chicago from the University of Michigan, where she served as Dean of the top ranked school of Social Work for 15 years. Professor Allen-Meares was a member of the Consensus Committee that created the recently released National Academies of Science, Engineering, and Medicine report titled Opportunities for Improving Programs and Services for children with Disabilities. She's here today to talk about the report and its findings. Dr. Allen-Meares, thank you so much for joining us.
Paula Allen-Meares:
Oh my pleasure.
Aliah Wright:
So we always like to ask our guests to tell us why they decided to enter the field of social work.
Paula Allen-Meares:
As a pre-adolescent, I was exposed to an outstanding professional social worker, [John de Biasi 00:00:01:21]. He worked for the Child and Family Services Agency in Erie County, Buffalo, New York. And he inspired me. He talked often about making a difference in the quality of lives, quality of life of others. And my mother also worked for that particular agency, and she was such a community organizer and advocate and worked with the elderly in the community. So in my development, helping others was kind of a generic value for me. Then when I got to college, I met a professor by the name of Dr. [Beach] at University of Buffalo, and he was deeply engaged in community development advocacy. That's how my interested in and social work came about.
Aliah Wright:
So can you tell us about the report on improving programs and services for children with disabilities?
Paula Allen-Meares:
In 2016, the Social Security Administration requested that the National Academy of Science, Engineering, and Medicine convene a thought leadership group to produce a comprehensive report on programs and services aimed at improving the health outcomes of school-aged children with disabilities.
Paula Allen-Meares:
I had served as a school social worker. I chaired a department in one of the high schools years ago and knew a bit about the special services and disabilities. I believe that's why I was invited to serve. There were 16 of us on the committee, and we represented pediatrics and adolescent medicine, mental health, speech and language, occupational therapy and rehabilitation, education, social work, health policy, and economics, and the list goes on and on and on. We also heard from thought leaders as well as parents who were nurturing and developing a disabled child. So it was a very comprehensive committee. And then we engaged others from outside of the committee who were informed about this particular population.
Paula Allen-Meares:
Let me regress a bit. In 1974, I was working with NASW. We were in pursuit of including school social workers as a related service in public law 94-142, the Handicapped Children's Act, and that experience, and the values as well as some of the tasks that are defined within that piece of legislation bode well today. Finding and identifying children who have a disability, helping to formulate their individual educational programs, working with their parents to make certain that they are informed of their rights and services particular to their child, referring children and families to the appropriate resources in their community and beyond, and then interpreting the policies. It's quite complicated. The number of federal policies and state policies that bear upon this particular population often need to be demystified and decoded for parents and others to utilize the services.
Aliah Wright:
Can you tell, can you speak a little bit about why it's important for those running programs and services for children living with disabilities to coordinate care across service sectors?
Paula Allen-Meares:
One of the most important reasons is for better coordination, a reduction of duplication of effort, to be more cost efficient, and to address the needs of the whole child. We have all these policies, but they're somewhat siloed. And as a consequence, they might respond to one need of a child while the child may have other needs. There's considerable heterogeneity within this school-age population of disabled children. So it's really important for parents and others to understand what each policy program offers, and for us, as professional social workers, to decode, to demystify the array of services. So the coordination, it's very complicated. As the consensus committee was engaged in it's work. I mean, it was very hard, in fact, for us to keep a focus on each policy. We really struggled with to try and understand how this particular policy related to a particular outcome for a child.
Aliah Wright:
What are some things social workers should know when assisting children living with disabilities?
Paula Allen-Meares:
Well, one thing that we did discover is that there's considerable co-morbidity within the school age disability population. Sometimes we found that there is not only a disability, but there's also another health issue. And I think it's really important for social workers to understand that this notion of co-morbidity or co-occurring illnesses. Children with disabilities are highly diverse in terms of their health conditions, the severity of the disability, their social environment, and the kinds of services and support that they might need.
Paula Allen-Meares:
And we as social workers need to contextualize and make certain that we are addressing the heterogeneity of the population. One size does not fit all. There are a large number of federal programs that provide supports, and to facilitate positive outcomes, improved outcomes for children with disabilities. And that's not only the social security income. Medicaid would be another, the Children's Health Insurance Program, CHIP, would be another. We have the Disabilities Education Act, IDEA. And there are various other programs within that supports our children vis a vis the US departments of health and human services, there's education, there's housing, there's urban development, and labor, as well as SSA. There are all of these policies, some federal, some state, that contribute, could contribute to better outcomes for kids if they are coordinated and understood deeply.
Aliah Wright:
Dr Allen-Meares, can you identify some of the report's major conclusions?
Paula Allen-Meares:
Well, one conclusion was that children with disabilities need access to a wide range of quality programs and services that meet their individual needs and support smooth transitions to new and different programs. We used a developmental perspective. Children at the elementary level have very different needs, perhaps, than an adolescent who is aging out of of the K through 12 program. So understanding the continuum of needs is important.
Paula Allen-Meares:
There are gaps and limitations in various programs. And we need to study these programs because some of them have implicit or explicit, I should say, limitations. They're hard to understand. They're difficult to obtain. There's the bureaucracy that parents have to deconstruct.
Paula Allen-Meares:
Another conclusion was that the evidence base for programs and services aimed at improving the outcomes for these children are more short term. In other words, the research base isn't the kind of longitudinal data that we need in order to provide effective services. There's a lack ... What I'm trying to say is that there's a lack of rigorous evaluation of programs and services. There's limited reporting of data. And so there is some inconsistency within some of the reports that we read. And what we're calling for is that we need to evaluate these programs. We need to take not only a short term perspective but a long term perspective.
Paula Allen-Meares:
And I could go on and on with conclusions. Children with disabilities and their families need better information. As I said, it's the bureaucracy, the language, the terminology. We want these programs to be, and also the legislation, to be user friendly. So there is a conversation in the report, a brief conversation in the report, about the importance of health literacy. How we need to use different languages so that parents can really understand what their rights, privileges, and what these programs can provide for them. The demographics of the United States are changing, and we have new immigrants, and we have individuals who are living in economically challenged environments who may not have graduated from high school.
Paula Allen-Meares:
So this whole notion of health literacy, having public policy people and program leaders to think about how they're communicating to these various populations is very important. And the National Academy of Medicine has a round table on health literacy, and the Department of Health and Human Services has a strategic planning process around health literacy. So I'm optimistic that we'll be able to demystify some of these policies and programs and services and to make them more user friendly for the varied populations that we're trying to serve.
Paula Allen-Meares:
Another conclusion was producing age-based information to parents and children. If you're in an elementary school setting, that's quite different from being in a high school setting and transitioning out of high school. Are we ready? Are there programs in the community to support the transition from high school to the world of work to adulthood? There's often a disconnect among those programs, and there are too few.
Aliah Wright:
What would most social workers find surprising about the results of the report?
Paula Allen-Meares:
I think they would be surprised to find that there is some explicit roles that are described within the report. There is an explicit discussion about some of the potential roles that social workers have played and continue to play. As we become more diverse, one of our principles is self determination. Another principle of the profession is you start where the client is, we understand cultural variations and cultural differences. So we add value to the conversation. And I think the report, even though we didn't have a space to present a long list of contributions that the profession could and has made, but there is some nice language about social work's contribution to this population.
Aliah Wright:
Professor, do you have any additional thoughts?
Paula Allen-Meares:
Well, first of all I was delighted to have been selected to serve on the consensus study report. I am delighted that the organizers of the committee thought about social work and its contribution. And by the way, we did hear from parents, and very informed parents, that even though they were very well educated, had means, they had a difficult time understanding and utilizing the programs and services available to them. So we have to do something about demystifying these programs and services for for all.
Aliah Wright:
Once again, the name of the report is Opportunities for Improving Programs and Services for Children with Disabilities. Professor, where can they find a copy of this report?
Paula Allen-Meares:
The National Academy of Sciences, Engineering, and Medicine's website.
Aliah Wright:
All right, we'll be sure to include that in our show notes. Dr Allen-Meares, thank you so much for taking the time to speak to us today.
Paula Allen-Meares:
Thank you.
Aliah Wright:
And thank you, listeners, for taking the time to join us. Until next time.
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