A Collective Impact Can Lead to Smarter Choices for the Autism Community
Groups focus on helping the autism community find solutions
By Dr. Rod Berger
“One parent told me she would walk across glass for her child on the spectrum. Parents will do anything and pay any amount to help their child. Unfortunately, some people seduce parents with hope – sometimes it’s truthful but sometimes it’s false.” – Dr. Cathy Pratt BCBA-D
Dr. Cathy Pratt, Director of the Indiana Resource Center for Autism (IRCA), takes a family first approach to helping the autism community. Far too often, according to Pratt, families are forced to navigate through a myriad of service choices that can be confusing and costly. Autism has become such an incredibly large business that families need help in discerning what is credible, research-based strategy versus what is profit or trend driven.
Pratt sees a collective impact model as the best solution to provide long-lasting care for those on the spectrum. Services are often silo fixtures within states acting independently and often duplicating the efforts of other facilities nearby. It’s important that leadership meet to share a group wisdom promoting a common vision. People speak the same language, according to Pratt, yet often they use different verbiage.
By coming together in mutual interest around specific topics, groups can iron out their language differences and stay focused on the task at hand – helping the autism community find solutions.
Rod Berger: Cathy, I’m looking forward to this conversation. Off air, you made an important comment about working with young people and families. You were specifically talking about the autism spectrum and all the different services and people that provide a collective approach to the improvement of an individual’s life and family. You talked about how a model of collective impact was a strong desire. Let’s start with that. When you’re working in Indiana at the director level with so many different groups of people in the space – what does it mean to you when I say collective impact?
Cathy Pratt: When I think about the collective impact in Indiana and every state for that matter, is that services are often “siloed.” When families try to access services, it’s very difficult to figure out those silos. I also see a lot of people duplicating each other’s efforts from state to state.
I don’t believe in an expert model. I believe in group wisdom. When I think of the model of collective impact, I think about a shared leadership and a shared vision. Even though there may be a facilitator, it is the guidance of a group of people having thoughtful discussions with a focus on bringing people together around specific topics.
For example, one of the ways that we have done it in the State of Indiana is through the role of Applied Behavioral Analysis (ABA) programs and working with schools. By getting people to sit around the table who come from different organizations, what we have found that our differences aren’t that great, it’s just that we all have a different language. We use different verbiage, and we don’t understand each other’s verbiage sometimes. If we can sit down, have a conversation and find out the commonalities, we will make greater progress along the way.
RB: Cathy, I know that you are part of a book that’s out by John McLaughlin and Mark Claypool, How Autism is Shaping Special Education: The Unbundling of IDEA. I want to focus on the term unbundling and go back to when you talked about shared leadership and a shared vision.
Using the folks you serve in Indiana as a backdrop – how do you think about unbundling when we are talking about different visions, different definitions, different approaches? How do we unbundle and yet bring together or fuse together these ideas, these approaches, and these services?
CP: Well, first of all, let me just tell you that the individuals that see these days are very complicated. I go into schools and spend a lot of time with students who have challenging behaviors. I am seeing children who are presenting complex behavioral issues. What we have done in the State of Indiana is establish a community of practice. In every one of our special education districts, we have an autism leader or consultant who is paid by the school district. We meet with them five or six times a year. We share resources. We share our information. We support each other. It’s not an expert model but a collaborative model because as these students are getting more difficult, none of us have all the answers. We need the collective wisdom of many people coming together.
I believe it is not one-size-fits-all for students. If you are really good at one single approach, the difficulty arises if that approach doesn’t work for that child. You may be at a loss. We try to prepare people with a lot of tools. We’ve trained our folks in the State of Indiana on all different kinds of strategies because our hope is they can use their clinical judgments and figure out what is going to work best for each child.
RB: Cathy, are you finding that parents are coming to the table much more informed than they were years ago because of the outreach that we find with so many different groups and associations? The sheer access to information and resources has better informed parents to have conversations with professionals like yourself that are more generative and understanding of community practice.
CP: The difficulty arrives when families first get the diagnosis, and they are looking for answers. Autism has become such an incredible business. If you go on the web and you search out autism and treatments or cures, however, you phrase it, you’ll see all kinds of folks that pop up. The difficulty is making sure families get credible information about research-based strategies.
For example, we have aligned ourselves with the National Professional Development Center on ASD, which is an organization that has come up with a number of 27 evidence-based practices backed by clear research. We’ve aligned ourselves with the National Standards Project, which was a document that looks at evidence-based practices. We still are learning and that there are still things out there that may not have the research behind them, but we try to encourage parents to be careful of not go down a road that’s not going to be productive for their child.
My heart aches for these families because parents want what’s best for their children. One parent told me she would walk across glass for her child on the spectrum. Parents will do anything and pay any amount to help their child. Unfortunately, some people seduce parents with hope – sometimes it’s truthful but sometimes it’s false.
RB: That’s a very interesting point. There are people spreading, let’s say, “mixed messages,” if I’m kind about it. The messages might, in fact, impact the choices parents make in the care of their child from the resources of their community.
CP: Yes. Absolutely. I tell parents to talk to other parents who have accessed different professionals to find out what the track record is for an organization about an approach. At some level, if it sounds too good to be true, it may be too good to be true. We developed in our state some guidelines for parents of things to look for in terms of credible services and not credible services. There are a number of things out there.
When you have a child on the autism spectrum, right away, the cost increases. It costs parents. They can’t just go to any dentist. They have to find a dentist who is specialized. They can’t just get a babysitter. They have to have registered providers, so everything becomes much more expensive. Many families risk financial bankruptcy and financial distress because of the cost that’s associated. I think it becomes so important to make sure families are using their funds wisely and they’re hooked up with professionals who are credible and have proven track records of working with children, and meeting outcomes that are desirable outcomes.
That’s the other thing that I would say to parents – be very clear with people about the outcomes you want your child to achieve. Do you want your child to make friends? Do you want your child to communicate? And be very clear about those outcomes as you’re working with professionals.
RB: Cathy, let’s close with this. What would be the lasting message you would give parents? You’re in this as a professional; you see the changes in real-time. I would imagine you forecast and predict some of the paths we may or may not take as a society in servicing and supporting children and their families What is the moral of the story for parents that are looking for resources and trying to understand how to evaluate in a world where information is coming at them so fast and furious?
CP: I would say families should get connected with parent organizations in their state. They should talk to other families. Most states have organizations like the Autism Society or other organizations that have a good sense of what’s going on in a state.
I would encourage families not to be embarrassed or fear asking for help. It is very difficult to try to figure out how to navigate the social services delivery system. I don’t know of any family that doesn’t need help at some point.
RB: Well, you bring a very balanced approach that’s very much appreciated. There’s so much going on, and it’s good to see a lot of progress being made as barriers are being torn down to provide positive outcomes for so many children with autism. Thank you, Cathy.
CP: Thank you.
About Dr. Cathy Pratt BCBA-D
Dr. Cathy Pratt BCBA-D is the Director of the Indiana Resource Center for Autism. IRCA is a statewide program that works to build local capacity for families and professionals to address the needs of individuals on the autism spectrum across the lifespan. This is done through training, consultations, coaching, research, and information development and dissemination.
Dr. Pratt coordinates the Autism Special Interest Group (SIG) through the Association of University Centers on Disability (AUCD). Dr. Pratt serves on numerous Advisory Boards, including the Advisory Boards of Maap Services, Inc., the Temple Grandin/Eustacia Cutler Autism Fund and the College Internship Program. In the past, she served on the Board of the national Autism Society and is the Immediate Past Chair.
Dr. Pratt also serves on the Panel of Professional Advisors for the Autism Society and is currently involved in their strategic planning. Dr. Pratt is co-chair of NATTAP (Network of Autism Training and Technical Assistance Programs). In addition, she is a member of the National Autism Leadership Collaboration. She also served as a member of the expert working group on services and as a member of the public review committee for the Research Roadmap of the Interagency Autism Coordinating Committee and in 2010 was invited to the White House to provide feedback on the president’s initiatives on autism spectrum disorders.
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This article was originally published in the Huffington Post by Dr. Rod Berger
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- The Washington Post – What our children with autism have taught us: Love with abandon, and laugh at yourself