Season 1, Episode 3 — 18 March 2016
About this episode
Lyle Romer recently retired as Executive Director of the Seattle-area community living agency, Total Living Concept. In this episode he reflects on his 42 years of experience providing person-centered support to people with disabilities and the future of community living under the Medicaid Home and Community-Based Services Waiver.
About the presenters
Lyle Romer has been working for 42 years to support people with disabilities to lead their lives and pursue their dreams by providing opportunities to become involved in their communities in ways which they create diverse connections with other citizens. He recently retired as the Executive Director of Total Living Concept. He was the President of the TASH Board of Directors from 2007-2008.
Donald Taylor is the Membership Manager at TASH.
Announcer: You’re listening to TASH Amplified, a podcast that seeks to transform research and experience concerning inclusion and equity for people with disabilities into solutions people can use in their everyday lives.
Today we are talking with Lyle Romer, who recently retired as Executive Director of the Seattle-area community living agency, Total Living Concept. We’ll reflect on his 42 years of experience providing person-centered support to people with disabilities and the future of community living under the Medicaid Home and Community-Based Services Waiver. Lyle served as President of the TASH Board of Directors from 2007-2008.
Donald Taylor: Lyle Romer, please introduce yourself for our audience.
Lyle Romer: Sure, hi, Donald. Nice to be with you today. I recently retired from my active work in the field of supporting people with developmental and intellectual disabilities. But I guess the quickest way to summarize my career over the past, oh, thirty or so years is: I was a senior research associate at both the University of Washington and, for a period of time, the University of Oregon. And I primarily coordinated federally funded research projects supporting folks with developmental disabilities in inclusive classrooms and inclusive community opportunities. I also spent a good deal of time as the representative of the developmental disabilities administration to the University of Washington’s School of Public Health and Community Medicine for a number of years, in which I managed research projects that were of interest to the state, that were conducted at the Center for Disability Policy Research. And for the fourteen years prior to my retirement, I served as executive director of a supported living agency just south of Seattle, called Total Living Concept. And in those fourteen years I also found time to be on the TASH Board for six years and serve as president through three. And that’s kind of a quick shot of who I am and what I’ve been doing for the last thirty or so years.
Donald Taylor: Going from academia to a support agency is an unusual career change. How did you do that?
Lyle Romer: Well, I’m not – I don’t know how unusual – it was pretty logical for me. Working for academia, I of course gained really useful and functional skills in many areas. Actually working for the state and managing research projects caused me to spend a lot more time thinking about, what would it be like if I was actually doing the things that I was trying to teach others to do. And I thought that would, you know, enhanced my ability to maybe understand what it took to create more opportunities for more people to have person-centered supports for a life that they wanted to live. So rather than teaching others how to do it, I decided to go do it myself for about fourteen years. And it worked out reasonably well.
Donald Taylor: Tell us about the model of Person-Centered Planning that had guided you in your career.
Lyle Romer: Well, I’m going to answer that probably a little unconventionally. As we all know there are many different processes that share a common denominator of being Person-Centered Planning. Things like PATH and MAPS, Essential Lifestyle Planning, on and on – there are numerous different labels that have been created over the years. But actually what I follow, and what I want to kind of point out to people is – and I don’t think this is – this is certainly very respectful of the work of people who brought Person-Centered Planning to larger and wider audiences in the late 1970s, early 1980s – primarily John O’Brian and Connie Lyle O’Brien and Beth Mount. But I think people do Person-Centered Planning – whether they’re calling it such or not – and I think both myself and more so my wife Mary – just did Person-Centered Planning without knowing it had a name. And I think when you take a look at the core values and core commitments one makes in doing Person-Centered Planning, you can see those are core values and commitments you make in any respectful relationship where one person the seeking help and another person is saying, “I’d like to be the source of some of that help for you; How can I do it best?” And I think when you reduce it to that, you find that you were doing Person-Centered Planning before you became aware of it. And I think the key, in finding out that, Wow, we were really doing something that other people have thought about too, was then the connections with those people that allowed it to grow beyond whatever it may have been and what it may have become. And I think when you encounter that community of practice of other people who share a good deal of your value base around how to support and how to offer support, then you get exposed to more things that have names and attached labels and so forth. But what you really find is the sharing relationships with other people who come together for the same reason. We’re all trying to in some way as an active agent or a catalyst, create more opportunities for people to have lives that they find fulfilling and satisfying, that are lived in the company of others. So I think it’s a natural kind of thing. I think you, you know, kind of have that inclination of person-centered but when you then realize thereare other people that do that it really takes off and grows.
Donald Taylor: A lot of the adult services world is not Person-Centered Planning-oriented. How did you become oriented this way?
Lyle Romer: Well, again, it’s story of meeting people along the way that you could find a way to work with those people and take the – if you will – if I can put it in a pretty basic level – is that you take the side of the person seeking support: you ally yourself with a person. And Person-Centered Planning, interesting enough, when you, you know, examine where it came from and examine, you know, the work of the people I mentioned – John, Connie and Beth and many others as well – you find very quickly that Person-Centered Planning is really a social change vehicle, if you will. It’s not a process that you can, you know, pull off a shelf like, “Okay, we have to have the ISP done, or the IEP, or the IHP, or the ISP or the I-blank-whatever-P you’re involved in, But Person-Centered Planning takes a broader perspective working with people; it’s not just a planning process. It’s a process that recognizes when one goes to the person and says What do you want your life to look like, not what does the state federal service system think your life’s going to look like. What do you want it to look like? And when you ask a question and align yourself with people, your process then becomes one of changing systems that don’t fit what is needed for a person to move closer and closer to the vision of their own life. So, as such, it’s always been – and nothing’s changed as far as I can see –in the role of Person-Centered Planning as a catalyst for change.
Because Centers for Medicare and Medicaid Services – CMS – put forth new rules that people have to have Person-Centered Plans. That’s Great. I mean, I guess. But I don’t see it fundamentally changing anything. There’s still a need for social change. States still take positions that I think most of us would agree, don’t quite measure up to person-centered practices when it comes to individual people. So, as such, the fact that people have to have a plan – well that’s okay, I guess. But it has to be considered distinct. The person-centered plan isn’t state services: they’re two vastly different things. The plan belongs to the person and it’s theirs; it’s not the state’s. How it interfaces with the state’s plan is an important question and I think an area we’re going to have a lot of learning needing to happen on both sides. How do we take this Person-Centered Plan and mesh it more closely? How do we do this in a way that states begin to modify their relationship with people and let go of some of their paternal tendencies of the past to make decisions about how people’s lives should look; what they should be doing as a result of services? So again, I still see this as Person-Centered Planning as a social change process and when we think of it that way we, you know, again hopefully move off of the setting where a plan is done and big pieces of paper on the wall. That’s wonderful. As my friends Norman Kunc and Emma Van der Klift said, what happens when the paper comes down is what really counts. And I agree. You are still aligning yourself with people and saying, I am in your corner and how do we find the resources that you need. And when those resources have barriers attached to them that don’t work for you, how do we change those barriers? You know, I think we all learned a great deal from Judith Snow, who as we know recently passed on, and her call to what that change means and how that fundamentally alters the relationships of people who seek to be supportive of people, into one of providing that support under the direction of the person that forms that circle around them [inaudible] You’re my allies and here’s how you can help. And I think that’s exactly what Person-Centered Planning is going to continue to be. At least I certainly hope so. That’s my intent as I continue my practice – to not change that direction.
Donald Taylor: What issues do you see emerging as the new Home and Community-Based Services rules are put in place?
Lyle Romer: Well, I guess I can answer that two ways, Donald is: (1) what I think will happen and  what I hope would happen. Let’s be more hopeful! I think at some point, what will happen is there will be opportunities to enter the dialogue around people create person-centered visions for their lives in which they’re encouraged to think of their lives no differently than you or I or anyone thinks of their lives: what is what are the important things. And I’m sure we can broadly expect certain things to come out. People want to have homes – homes of their own. People want to have meaningful activities, purpose in their lives. People want to have relationships with others that they care deeply for, and in return are cared about by those people in their lives.
And as people pursue that vision, that opportunity for that vision that’s provided in the person-centered process, and as we begin to work towards that, I think the emerging point that we’re going to have a lot of dialogue over is how, still, state services systems are aligning in developing policies and administrative rules that, upon first examination, do not seem to mesh well with the person-centered approach. A couple of examples, if I might. Many states, not just one or two, have some form of rule or policy that really discourages people from having truly homes of their own. They’re still expected to live in groups. Granted, the groups are smaller than institutions of the past, but they’re still groups. And the key in understanding what are still vestigial institutional practices are, we make decisions for people; it’s a power relationship. When you say, people: you will live with two or three others that you don’t have a choice of, that’s still an institutional model. It may be in the community. But it’s still clinging to an institutional approach.
When you look at that – and I hope this is the kind of dialogue we’ll get into – you quickly surmise this is a fiscally motivated process. People believe that it’s less expensive, or more altruistic: I can serve more people if you guys would live in a group. And I would put to challenge that notion. I think that’s flawed thinking. I think when you look at what person-centered, as I believe, as I’ve been taught and learned, how it works is, you don’t go to the state and say, Okay: here’s my vision: let’s align all the services for me in this way. People who really approach person-centered – and who, I think, really get it, they start – it comes from the inside-out, not the outside-in. It starts with the person and their resources. It starts with their family and the resources that that family gives all its members in in developing the life that they want. I think you draw allies to you. You have other supports in your community that are there, most of which have nothing to do with you having a disability. They may have to do with your income level. But you assess all of those and use all of those before you go to the state and say, now I need you to help fill in the gaps, not the other way around.
When you do it that way, it is not more expensive to support people individually, to live in homes of their own, have jobs that are meaningful and fulfilling, and have a wide range of relationships that are mutually caring. I think the fallacy comes from when you think, oh everyone is going to live on their own and everybody’s going to just send a bill to the state for all the costs of living alone, that’s – No, that’s not the way it works. And that’s, again, a very historically – you know, it’s kind of like a bush that’s prickly and hard to eradicate: it’s just something that’s got started, and it persists and it does not have to be true. It is not true if you take a different approach to working with people, and finding all the resources, not just the state dollar. So I think that’s a big emerging issue.
I think the other is: states are going to have to find a new way to develop policies and rules that can ensure that their dollars – they have a responsibility to ensure their dollars are spent wisely and effectively – it’s public money – stewardships important – but I think one of the ways that we kind of got hung up and where it clashes with person-centered is when you make a decision from a great distance, as if some vast number of people who receive supported living for instance – some 5,000 people – are all equal and alike and you write a rule that applies to all equal and all alike. For instance, everybody shall have three habilitation goals, at a minimum, in their ISP – individual service plan. Well, I can guarantee that’s not going to work for a certain number of people. Habilitation goals are not what people are interested in, per se. And it clings to the old thinking that somehow people are flawed and if they have enough habilitation goals that are successful, they’ll gain skills and they won’t need as much support – and that also seems to be a fairly sketchy formula. So I think, you know, learning to invest and cultivate local decision-making that enhances people’s opportunities to, again, develop those relationships, live those lives that they find fulfilling. And really seriously, seriously being to question rule-making that applies as if equal across vast numbers of people, when we know it just doesn’t – I believe it works better when we invest in local decision making.
Donald Taylor: Is it possible to change the ethic of a large organization? …
Lyle Romer: Mhmm.
Donald Taylor: … If not, how do we incubate small support organizations?
Lyle Romer: Well, I think the answer is yes and I think you can and I don’t think of it as help convert large [organizations] or do something else. I think you do two things. I think you can help large organizations change and convert. I also think we’ve learned it’s a long process, a slow process. It’s a good thing to do. It’s the right thing to do sometimes. But getting buy-in, getting commitment of all those involved, often is disruptive. And, you know, people have to think about, do I want to hang in here and continue doing it, even though it’s going to be different than what I’ve been doing for a long time. So I think yes, you can do that. I believe efforts to do that are still well founded. However, I also believe that just looking at converting large organizations is a strategic error in thinking. The other alternative is – well, I don’t even think it’s an alternative – I think it should be happening consecutively – is that you develop small, agile agencies that can adapt and start from day one with a commitment to person-centered work with people.
We have – I know in numerous states there are people waiting because community services in agencies – the spots might be available but for a variety of reasons it’s tough to get people into support in some of the agencies – just the logistics of it, the challenge of hiring new staff. There are a lot of reasons that we can find a quicker path to opening some opportunities for people to receive person-centered supports when we go and say, let us begin, let us start twelve new agencies this year, let us recruit. And I think the people are out there to be recruited into this agency that will begin its journey from the get-go with a deep understanding and commitment to person-centered principles. And I think you do both. I think you can convert the large and I think you can – I spent a good number of years working at the University of Oregon in the State of Washington in in the mid- to the end of the 1980s in which we began – I’d have to go back and count – at least a dozen agencies across the state and taught them a new way – it wasn’t necessarily person-centered, strictly – but began all those new agencies, and they all started with eight, ten, twelve people. And many are still around now – and are the large agencies that maybe need to be reoriented. But I think you do both and I think the resources are there to do both.
Donald Taylor: So a lot of the way that support is structured has to do with the policies of state governments. Is there any opportunity in the near future for review or public input on these policies?
Lyle Romer: Well, there is always a process for for review and public input as people are on waivers, they have rights of fair hearings and appeals and all of the due process is laid out. It’s not always perfect. I wish it was a little closer to the model under the IDEA, that governs education for folks with intellectual and developmental disabilities, where there are appointed fair hearing officers that are neutral from both the schools system and the families and the students. You know, we don’t necessarily see that in all the state structures for fair hearings and waivers. I think you’re often still appealing through the state system which –you know, I’m not accusing anyone of anything dastardly – but that’s a biased system: you’re still appealing and the judge is part of the system you are appealing about. So I think you’re, you know – it would be nice if we had a little bit more independence in the hearing structure.
And CMS periodically is, you know, certainly open to input from the field. I’ve always found the folks at CMS to be more than happy to get phone calls and e-mails about how things are working, what’s working, what’s not, how can they be changed and improved. So I think there’s no scarcity of opportunities, I think, for input and for change. I think, again, I’d like to see the system a little bit more impartial for fair hearings as we get into this, deeper and deeper. But, you know, I think, yes, it will come down to – and I think the federal position is they’re not going to, you know, put out a cookbook for states to follow. And that’s good: they shouldn’t. But I think we also have to monitor how states put these – put their practices in front of people and say, this is what we can make available to you. And we know you have this person-centered plan now. And I think one of the things that I’ve seen very little of so far is a state that’s honestly sat down and said – a couple have, a couple have – really, apparently shown a real commitment to going through it and looking at their whole system and say, how does this need to be changed. I think others have done very little serious review of their own policies, their own administrators rules and practices around, how does this work as a person-centered approach to working with the people that were responsible for. So I think there’s a good deal of learning to be done on both sides. But, you know, having worked for a state for a goodly number of years I think there’s going to be some real challenges for states to figure out how to still be responsible stewards, but to stop being so prescriptive in how people should live their lives.
Donald Taylor: If you want to start an organization to provide the kind of person centered supports we’ve been talking about, how would you go about doing that?
Lyle Romer: Well, I’d start talking with people – I’d start talking with a group of people who want supports. And I’d be talking locally with the people who have identified themselves as being interested in offering supports to people with developmental and intellectual disabilities. I think there are, once again I’ll reference earlier: I think there are a lot of people out there doing person-centered work but they’ve never called it such. And I think the key is to get in local, local, local conversations. If I were in my own state, which I know the best – I know dozens of people out there in the community that I would, you know, they’d be on my list to get in touch with and begin the process of talking. How can we find other people that, you know, would want to join a board of directors. How can we recruit the people that are, you know, going to be in support relationships – and leaving the bulk of that decision to the people who are seeking supports.
And there’s a lot of different models you can follow. You know, you can be nonprofit, you can be a co-op. You can, you know, structure yourself in many different corporate guises to do that. But I think it’s all finding those local people that already have the heart that beats with this rhythm. And you find those people and you bring them together and – a lot of the rest of it isn’t, you know, isn’t magic: it’s just rolling up your sleeves and getting in there and doing the work and making sure you every day are always thinking, how is this work consistent with the principles that we hold dear.
Donald Taylor: Well thank you for taking a few minutes today to talk to us about your career in person-centered planning.
Lyle Romer: Sure thing, Donald. Happy to do it. I enjoyed the opportunity to chat with you. And I’ve always been a huge supporter of TASH and I always will be. I think TASH is a big player in the future of this, so I have a great deal of hope that TASH will engage in – as it always has and be a major resource to people who believe there is still a lot of work to do here.
Announcer: You have been listening to TASH Amplified. For more about the series, including show notes, links to articles discussed, a complete transcript and a schedule of episodes updated as they become available, visit tash.org/amplified. You can have the series delivered automatically to your device by subscribing on iTunes. Also, if you liked this episode, be sure to leave a rating for us there.
To learn more about Person-Centered Planning and what the Home and Community-Based Services Waiver rule means for service provider agencies, you can listen to TASH’s seven-part webinar series, Stepping Up to the Promise and the Spirit of the Home and Community Based Waiver: Person-Centered Planning, Thinking and Doing, available through the TASH store. Episode six in the series, Truth Telling: Bringing Consistency to the Practice of Supporting People, is a conversation between Lyle Romer and Jeff Strully on how to manage an agency in a way that embodies the principles of Person-Centered Planning.
TASH is a values and research-based advocacy association located in Washington, D.C., with local chapters coving 18 states. In 2015 we celebrated our 40th anniversary. We offer organization, advocacy, collaboration, scholarship and education for people with disabilities, researchers, educators, service providers and family members. In addition to this podcast series, we offer a scholarly quarterly, Research and Practice for Persons with Severe Disabilities, a popular magazine, Connections, a series of conferences. You can learn more about TASH at tash.org. You can receive updates from TASH on this podcast and our other activities by following us on Facebook or on twitter at @TASHtweet.
This has been a sample of the colleagues and conversations available through TASH. It is only because of the excellent work that our members do that we can bring you this information. For more resources such as this and to become a member, visit tash.org/join.
We’ll hear from another outstanding advocate again in two weeks.
This transcript has been lightly edited for clarity.
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