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An Autism Spectrum News Interview with New York State OPWDD Commissioner Courtney Burke

It has been six months since Courtney Burke was appointed Commissioner of the New York State Office for People With Developmental Disabilities (OPWDD). Among the many things she has accomplished since that time, Ms. Burke has completed a statewide Listening Tour focused on issues concerning individuals in her agency’s care and their family members, as well as those of OPWDD’s 23,000 employees. She has also made protecting the health and safety of individuals with developmental disabilities the top priority, and is enacting systemic reforms to this vast system that serves the needs of over 126,000 individuals in New York State.

New York State OPWDD Commissioner Courtney Burke

New York State OPWDD
Courtney Burke

Autism Spectrum News is pleased share our recent interview with Commissioner Burke to familiarize you with her background and her immediate and long-term plans for OPWDD, an agency vital to the ever-growing needs of the autism community in New York State.

Q: How does your background prepare you to serve as Commissioner of OPWDD?

A: A great deal of my background relates to my new duties as Commissioner of OPWDD. My entire career has been devoted to improving how government services are delivered, with a great deal of experience working in health and disability policy.

I received my Master’s Degree in health policy and management from the School of Public Health at the University of Albany, where I worked on a project of the Department of Health aimed at refining the processes for improving durable medical equipment for people with disabilities through the Medicaid program. This project was designed to revamp how Medicaid was executed.

After that, I worked at the New York State Office of Advocate for Persons with Disabilities, which later merged into the Commission on Quality of Care and Advocacy for Persons with Disabilities (CQCAPD). I spent seven years working on a wide range of issues for people with disabilities including early intervention, school services, employment, Medicaid, Medicare, and health care. My time at the Office of Advocate for Persons with Disabilities provided me with a global view of the various issues concerning how agencies often have difficulty working together.

From 2007 to 2011, I served as Director of The Nelson A. Rockefeller Institute of Government’s New York State Health Policy Research Center (HPRC), where I oversaw all health policy research. I directed projects involving the administration of long-term care under the Medicaid program, health reform implementation, Medicaid financing, Medicaid waivers, Medicaid funding for nonprofits, policies for expanding private insurance coverage, and looking at what states were doing that was innovative in terms of delivering care. This experience is helping me here at OPWDD, as we are now moving forward with an 1115 Demonstration Waiver. My national research on different types of demonstration waivers is applicable for my work at OPWDD. NYS Governor Andrew Cuomo was looking for an OPWDD Commissioner who was prepared to improve this office in a very reform-minded fashion. He brought me in to make some of the changes that they thought were necessary in that regard and I feel very privileged to be here.

Q: How will you improve the availability and quality of programs and services to better meet the needs of the growing autism community?

A: I have seen the demographics and am aware of the growing and diverse needs of the autism community. I think it is great that the agency (then the NYS OMRDD) saw this was happening and took steps to address the ever-increasing needs of this expanding community of individuals. Back in 2008, the agency established the Autism Platform to identify the different areas where the state needed improvement, such as training people about autism, making sure we have the right support systems in place, and making sure there is scientific research being conducted at the Institute for Basic Research in Developmental Disabilities (IBR). Recommendations for improvement were recently updated in 2010 based on the findings of the Interagency Autism Coordinating Committee (IACC). The priority is to ensure that we are true to implementing what has been established through the Autism Platform.

In the near future, I will direct OPWDD to confirm that the Autism Platform is still relevant and continues to meet what we see as the challenges of the future.

Q: Will these improvements be statewide or more focused on specific regions in NYS?

A: I believe improvements need to be statewide. There certainly are pockets of innovation or places where there’s a particular need, but the best thing we can do is learn from that innovation and make sure that, when we know something works, it gets disseminated and replicated. That is really the role of the state: to make sure the best practices get implemented.

We have had two major priorities since I have arrived, which are very relevant to autism in general. The first one is ensuring the safety of the individuals that we are serving. Much of this first priority comes as a result of some of the recent negative press. We have been implementing a number of different reforms in that area, including making sure we are hiring qualified people into the system – we didn’t really have minimum qualifications previously – and then supporting them once they are a part of the system with the proper training.

An important aspect of employee training is making sure employees are knowledgeable about autism and the different needs of the population that we serve. If there is an incident, employees will be required to report it in a timely manner according to our new policy and procedures so that we can track that information in real time, analyze trends, and be proactive about preventing future things from happening.

We also have shored up our entire investigations process, making sure we have qualified, certified investigators. If something does happen, it will be properly investigated. Changing the culture of the agency to be one that is more sensitive to the needs of individuals is a priority so that people truly respect the individuals they are serving. We have many reforms that we are engaging in and that I think are very important. Ensuring the health and safety of the individuals we serve is essential.

The other exciting initiative we are implementing is an 1115 Demonstration Waiver, which we are calling the “People First Waiver.” This waiver process looks at the current system we have and asks, “What do we want the system to look like in the future?”

Q: Can you give us an overview of the 1115 Demonstration Waiver?

A: The 1115 Waiver refers to section 1115 of the Social Security Act that is being waived. This is a “Research and Demonstration” Waiver, the most flexible of all of the different types of waivers you can ask for from the Federal Government.

We sent the Federal Government a concept paper showing what we would like OPWDD to look like in the future. The concepts are ones that provide more “person-centered” care, allowing for better care coordination, so that individuals are getting the services they want and need. Our current system is very complicated, with more than 5,000 different rates in the Medicaid system that providers have to deal with, resulting in more than 13 million transactions per year. The current fee for service system is very complex and doesn’t result in the best outcomes because so much emphasis is placed on services as opposed to the client’s needs.

As we look to reform the system, we have formed a Steering Committee for the People First Waiver, which will oversee and guide the development of the new waiver and shape the ultimate system reforms the waiver will achieve for New York State. The Committee is made up of individuals with developmental disabilities, family members, service providers, public officials, and noted experts in health care and long-term care.

The design teams for the People First Waiver will examine key policy aspects of the developmental disabilities service system and make recommendations to the People First Waiver Steering Committee regarding how New York State can best achieve the goals set out in the waiver concept paper. This concept paper can be viewed at The five Design Teams are focused on Access and Choice, Benefits and Services, Care Coordination, Fiscal Sustainability, and Quality Design.

The Access and Choice Design Team is focused on access and choice for individuals. This starts with the tools that you use to evaluate what people’s needs are. Currently, the focus is on people’s disabilities rather than their abilities and potential. The Benefits and Services Design Team will make sure we preserve the services and benefits that the population is going to need in the future. The Care Coordination Design Team will be addressing our desire for more integration, such as mental health care for individuals with a dual diagnosis. The Fiscal Sustainability Design Team will focus on how we can change the way we pay for services so that the desired outcomes can be achieved. And finally, we have the Quality Design Team. Currently, we have a very punitive checklist-type system where providers have to meet a list of minimum requirements – yet do not focus on what the outcomes are for the individuals. This is something we are interested in changing so that we can start paying for outcomes and provide incentives for providers to do things such as continuous quality improvement.

Q: Will the 2011 budget impact the provider’s ability to provide safe, quality services?

A: The current tough fiscal environment we are in has forced us to become more innovative and creative, causing us to take a look at the current system and determine if it is really the right one.

I am often asked how OPWDD will meet the growing needs of individuals in the system who we have never served before, such as those with a dual diagnosis and who are medically complex. Our system is very “supply-sided” right now, where we have a lot of wonderful services and try to fit people to these services. Sometimes this is not necessarily what they need. For example, somebody may not need 24/7 residential care with daily day habilitation, but that is their only choice. We would rather see a system where individuals and their families can choose what they want. I think by fostering that approach we will be better able to see the demand and modify the numbers of services.

In these lean fiscal times, service providers are also being forced to get creative. OPWDD has been supportive in working with the providers to make sure that they can have economies of scale where they need it to deliver services. In this way we are serving as a conduit so the provider organizations can have those conversations on how they can work together, do things more efficiently, and collaborate.

Q: Can OPWDD develop a plan to provide more and safer community housing options for adults with autism spectrum disorders?

A: As part of our strategic plan, we are looking at housing and making sure people live in a home of their choice. We have some pilot demonstration projects in place to answer the question, “What are the proper supports that people need to be living in the community?” We will continue to research this. Technology provides us with some new options that we didn’t have 10 years ago to provide additional forms of support for people in the community.

I can’t overemphasize the importance of local communities working together on solutions to make sure people have integrated options.

Q: Can you share some of the vital new research coming out of the Institute for Basic Research?

A: They are doing a lot of exciting research, from diagnosis and screening to treatment and prevention. Something very exciting that the Institute for Basic Research is currently involved with is brain mapping, where they analyze very thin slices of brain tissue, which have been graciously donated by families, to see if they can identify autism spectrum disorders and the complexities associated with them.

They are also doing work on early behavioral assessments, working together with the State Education Department, and some promising research on folic acid and whether it has any link to autism. They are also examining the placenta to see if there are any clues there that might provide a link to autism spectrum disorders.

Q: What are your hopes and goals for the future of OPWDD?

A: I envision the New York State OPWDD becoming a system that supports exactly what people want and need, so that they have more choice in the services that they are receiving and that they have the option to access services in a more integrated community-based settings. This is a major goal of the 1115 waiver and a major focus of each one of the design teams we have.

Q: What message would you like send to the autism community of NYS?

A: I want the autism community to know that I am very committed to the challenges ahead, and I very much value the input of families and individuals in the community. When I first became Commissioner, I embarked on a statewide Listening Tour that was incredibly valuable in shaping what I think the priorities should be for OPWDD. I always want to have an open dialogue with the community. I heard many positive things from families about what a difference OPWDD services make in their lives and how glad they are that OPWDD exists to support them. Effective lines of communication are critical to OPWDD’s reforms and long-term success. A priority of my administration is opening the lines of communication among people with developmental disabilities, family members, advocates, and employees.

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