An Interview with Brokerage Association Leader Kathryn Weit

By Larry Deal
Executive Director, Independence Northwest
Communications Director, Oregon Support Services Association

I recently sat down with newly-appointed Oregon Support Services Association Executive Director Kathryn Weit to discuss her history, her thoughts on the brokerage system, the implementation of the K Plan, and where she sees brokerage services headed.

Kathryn has been a hugely influential player in services for people with intellectual and developmental disabilities both in the northwest and nationally. She played an integral role in the development of brokerage services in Oregon and brokerages statewide could not be more pleased that she’s signed on to lead us into Oregon’s next phase of services. Sometimes the best way to figure out where you’re going is to remember how you got where you are. Our conversation started there.

Larry: What did services look like in Oregon twenty years ago?

Kathryn: Looking back fifteen years plus, prior to the filing of the Staley lawsuit and the creation of the brokerage system, Oregon was in the process of downsizing an institution and we had very, very long wait lists.

Larry: Wait lists for community-based-services?

Kathryn: For everything. I use the term wait list loosely because it really never was a wait list. It was a crisis list. If you went into crisis, you got services. There were very few services for adults except group homes. Any family of a child under 18 who needed any kind of support had to go through the Child Welfare system. And they had to say they were on the verge of having to place their family member out of home, usually into foster care. It had to be that serious before there was a possibility of getting in-home supports. The stories you’d hear families tell about trying to survive without any support and then having to say this. It was devastating.

Larry: And your son, Colin – you were in this situation with him, right?

Kathryn: When my son was sixteen, we had a major crisis in the family and we had to go the crisis route. We had to go to Child Welfare and we had to tell people why we couldn’t handle our situation any longer by ourselves.  It was one of the hardest things I have ever done in my life.

Larry: And when you say services – what are we talking about here? What did these services look like?

Kathryn: Early on the services through Child Welfare were designed to support families with respite, in home support, and things like behavior support. Later the Developmental Disabilities Program created some very small, grant funded, family support programs for families with children under 18. It was later expanded to include families of adults. Services were extremely limited. For example in Multnomah County there were only fifty families who had access to supports. (Ed: for comparison, there are thousands in services in Multnomah County today.) It was very limited, but it gave advocates a model to draw from. First, someone needing supports got a “guide” (much like a Personal Agent) to help find and engage with community resources. And second, you got a little bit of funding. But for the first time it was funding that was family-controlled. The satisfaction level in that program was incredibly high. People thought it was amazing. And when the state asked, people told them that their “guide” was the most important thing. These pilot programs helped shape some of the understanding of policymakers.

Larry: The structure sounds very much like the structure and services offered by brokerages today.

Kathryn: Yes. Then later, before the Staley lawsuit was filed, the state applied for and received a Robert Wood Johnson Foundation grant. The idea was to look at what was becoming a national agenda in terms of self-determination and to apply some of those principles to adult services. They set up a small model brokerage (Self-Determination Resources Inc.) and this really pushed systems change.

Larry:
At the time, over 5,000 people were waiting for services, which led to Staley v. Kitzhaber.

Kathryn: If you consider both adults and children who were eligible but not receiving services, yes. Yes, the lawsuit was based on the fact that there were people who were eligible for services but denied them. The State chose to negotiate a settlement of the lawsuit.

Larry: After the lawsuit was settled, the state set out to develop services for everyone on the wait list. How did the brokerage model emerge?

Kathryn: Oregon chose very specifically to say: “This is Oregon, we have economic ups and downs, we are not a rich state, we cannot afford to provide 24 hour, seven days a week residential services to everybody on our wait list.” Many people don’t need that level of service. We learned that people are good decision makers about what they need in their lives when given support and guidance that’s meaningful to them. A crucial element was that families and individuals with disabilities needed to be in the leadership role. Through much discussion, stakeholders arrived at the conclusion that small, decentralized nonprofit and community-based programs would provide a solid foundation for choice-driven services.

Larry: And then we fast forward thirteen years. Oregon chooses to pursue higher federal funding through the Community First Choice Option (the K Plan.) What are your thoughts on this change?

Kathryn: I think that for years we have argued that we needed more resources in the DD system. We all know that there are people with significant support needs who aren’t receiving the level of supports that they actually require and need. We knew that the existing Support Services funding was not adequate for many people. I think the K is an incredible opportunity for Oregon to bring more resources into the state. The challenge is in the implementation.

Larry: Do you think the state expects us to deliver services differently now as a result of the K Plan’s implementation?

Kathryn: Well, additional resources are wonderful but we need to remain focused on the goals, the vision that people with disabilities, with appropriate supports, can create a full life, rich in friends and meaningful community connections, employment and significant relationships.  It is what we want for all our children. There’s no reason we have to lose those values, though I believe they are significantly endangered. The K has forced change in what I believe are the fundamentals: self-determination, choice and control. We have moved to a system that is deficits-based. That being said, I think there are ways- could have been ways – that didn’t undermine these cardinal values. Brokerages are committed to keeping the conversation about these values alive. It hasn’t been popular because it isn’t easy. I think we all recognize that any kind of system change is difficult and that the implementation process is the hardest part. That being said I am struck by the lack of planning that has ignored the hydraulics of a lifespan service system, the failure to listen to the lessons learned in the past, and the failure to listen to operational wisdom of stakeholders. The result has caused long-held priorities to be turned inside out. We will continue to  push for involvement in these conversations, before decisions are made.  It is important to have our core values drive decision-making instead of being after-thoughts that are an inconvenience to the process.

Larry: You mentioned a deficits-based approach. This brings to mind the Functional Needs Assessment or Adult Needs Assessment, which is a tool we now use when people enter brokerage services. The tool measures a person’s support needs and determines what services they’re eligible for. When you think about having a needs assessment completed – well, that’s something many states require. This isn’t a new idea, it’s not out of left field. But what you’re saying is that it’s not the tool that is the concern, it’s the approach.

Kathryn: It’s the implementation that’s the problem. Most states have some kind of assessment like this – a functional needs assessment. I think the key is in how the process gets framed. I recently went through an assessment with my son. I think the person who did it is wonderful and I understand that time is short. But I would have liked to hear “What would he like to be doing? What would he like his life looking like?” It would help focus on the idea that these supports are being offered for a purpose. There is great power in starting an assessment by talking to someone about who they are and what they hope to be. It’s not just powerful for people with disabilities. It informs the way we all think and behave.

Larry: I think brokerages are focusing on goal development first and finding a way to fit the needs assessment in as naturally as possible. It’s a shift and we’re still learning how to make all the pieces fit. One of the bigger concerns right now is that the tool being used is temporary, just a placeholder. This is an untested experience and, as it stands right now, Oregon plans to change the assessment tool we’re currently using and replace it with a different tool by January of next year.

Kathryn: What we must not lose sight of is that this may be just a pilot project in some people’s eyes, but for the people going through this assessment having their support plans radically changed, there is nothing “pilot” about it. This is about their lives. It’s about getting the resources they need and are being told they’re entitled to under the new funding model. I think it’s a really important message that people making these decisions need to understand. This is not a pilot. These are people’s lives. Clearly, the introduction of any new assessment tool and process must be thoroughly planned and implemented in a way that does not disrupt the lives of customers and families or cause chaos in the system. January 2015 is too soon. The dust will have not settled from this last effort.

Stay tuned next week for Part 2 of our talk with Kathryn. She discusses the brokerage response to the K plan, the concern over monthly versus annual budgeting for customer plans, and thoughts on appropriate long-term strategies to assure a sustainable future for services for Oregonians with intellectual and developmental disabilities.

Thank You and Well Wishes to INW Co-Founder and Assistant Director Erin Graff

Tomorrow, Friday August 3rd, 2012, is Assistant Director and co-founder Erin Graff’s last day with Independence Northwest.

Those are such strange words for me to write, think, say. The whole of my professional life here in Oregon has been somehow connected with her. I met Erin when we both were employed by United Cerebral Palsy in SE Portland a decade back. We were working in half-management/half-direct support roles on different teams and I was immediately drawn to her bubbly personality, sharp perception, and authentic passion for the people we were supporting.

In 2006, while she was working as a Lead Personal Agent at Inclusion Inc., Erin joined together with me, Ron Spence and our tiny little board of directors to create what’s now known as Independence Northwest. Creating a new nonprofit organization from literally nothing more than a dream is equally exhilarating and exhausting – it’s a once in a lifetime experience and we were blessed to have such an opportunity together. Erin, Spence and I holed up day after day for fifteen hour days furiously penning our response to the state’s RFP (Request for Proposal) in the spring of 2007. We turned everything over and inside out to create the most comprehensive response we could, learning a lot from and about each other in the process. It was hard work –  we knew we wanted this more than anything and we wouldn’t allow ourselves to fail. That resilience paid off and INW was chosen as the next Oregon support services brokerage. Before we knew it, we were renting our first office space: an old dilapidated firehouse on MLK and Alberta in NE Portland. Within a couple months, we had doubled our staff size and were opening our doors and inviting our first customers on board.

I’d always known she was one of the smartest people I’d ever met (she’s got a memory that puts most of us to serious shame) –  however, we had never worked together very closely in the past (more as peers cross-agency than anything) and I’d never experienced her fully in action. When our first staff started at INW, Erin developed extensive training for them to assure they were ready to serve INW’s first customers at the highest level. She did a fantastic job – she’s one of the best trainers I’ve ever seen. She can explain complex bureaucratic information five different ways if you need her to. If a person is struggling to understand something, she does whatever it takes, altering the format however necessary to get the point across. Most people have a trick or two and they’re spent. Not the case here. She continues to impress me all these years later.

The other immediate mark she made on me happened in a more public arena. I’ve always been a bit on the shy side at meetings – Erin, by all accounts, is not. She impressed me then and still does with her bravery and pluck. She’s willing to ask the hard questions to move a conversation, situation or policy forward. In the eight or so years she has been in the brokerage system, Erin Graff has made an indelible mark. If you work in this system, there’s no doubt you have in your possession right now or regularly follow multiple processes, procedures or local area agreements she’s written or had a major role in creating. Erin has always been interested in continuing to the move the system (and all its players) forward to assure we are serving the disability community in the most efficient, fair and consistent way possible. She has reminded me time after time to take risks, to ask the hard questions – and to continue asking them until you get the answers and understanding we all need to benefit the community we serve. Her approach has assured progress. People’s lives have been changed and bettered as a result.

On Monday of next week, Erin would have celebrated her fifth anniversary with Independence Northwest. Instead, she will be busy with last minute planning and packing up her remaining belongings in preparation for the next chapter of her life: a move to New Orleans. We will miss her greatly.

Personally, I will mourn the loss of Erin as a business partner and confidante – I already am. At the same time, I will benefit daily from the lessons I’ve learned from her and from the structure and culture she helped build within this organization and within the brokerage system at large. She’s changed my life and I’m guessing if you’re reading this, there’s a good chance she’s changed yours in some way as well.

Bon voyage, Erin. And congrats, New Orleans – you just caught a good one.

– Larry Deal, Executive Director

PS – If you haven’t yet had a chance to wish Erin well, drop her a line between now and end of working day Friday at erin.graff@independencenw.org.

New Disability History/ADA Documentary Forthcoming

National Disability News Resource

Disability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others.

Five days each week Disability Scoop sifts through the clutter to provide a central, reliable source of news, information and resources. Plus, Disability Scoop is the only place to find original content and series like “Scoop Essentials” that take an in-depth look at what lies beyond the day’s headlines.

Eastern Oregon Training Center Closes

Yesterday the last person living in Eastern Oregon Training center moved out making Oregon one of only two states in our country without an ICFMR.

From The East Oregonian:

The activity room at Eastern Oregon Training Center is hushed now, only the bubbling of a fish tank breaking the ghostly silence.

Direct care staffer Eileen Waggoner can still hear echoes of voices and laughter in her mind from days gone by, along with soft jazz from the boom box, a whirlwind of cutting and pasting, tambourine banging, Yahtzee and Bingo, the planting of marigold seeds.

Now most of the clients are moved out to residential settings and even the nine fish in the activity room need homes. The final three clients move out Tuesday.

EOTC has been on and off the chopping block for years, but finally the axe blade hit firmly this year when Oregon legislators directed that EOTC’s 40 residents move to smaller neighborhood group housing by the end of October.

“It’s really sad – I’ve been here 28 years,” Waggoner said. “They are family.

Nurse Conrad Bozlee worked two stints at EOTC, plus ten years at Salem’s Fairview Training Center. Bozlee said care of the developmentally disabled has evolved from warehousing to immersion.

“At the turn of the century, institutions were built to remove them from the spotlight,” he said. “They were considered to be evil – a blight on society. It was a fancy way to say they were scum.”

Fairview opened in 1908 as the Oregon State Institution for the Feeble-Minded. During World War II, society softened its view, Bozlee said, and began viewing the developmentally disabled as innocents who would forever remain children. Institutionalizing them, however, was still the norm.

Later, civil rights activism prompted changes.

“A lot of money went into mainstreaming,” Bozlee said. “People started asking, ‘Why are these people in prison when they never committed a crime?'”

With the latest move to community settings, he said, “Oregon is actually ahead of the curve.”
Continue reading

Thanks for Kathryn Weit for the link.

Fairview Training Center Photo Set and History Posted on Flickr

Unkannyvalley, a photographer who shares work on Flickr, has posted  a comprehensive history of Fairview Training Center and a compelling photo essay taken in 2007. Check it out here.

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