Kathryn Weit had a profound effect and left an indelible mark on the developmental disabilities community in Oregon. She was a mother, a visionary, and a primary architect of the service delivery system for people with disabilities and their families. Her influence cannot be understated.
A collective of friends, family, and colleagues have gathered together to continue Kathryn’s legacy of interconnectivity, mentorship, and advocacy, forming The Kathryn Weit Foundation.
The mission of the Foundation is to empower the developmental disability community through advocacy. By amplifying voices, the Foundation strives to inspire and mentor the next generation of social change makers.
With public donations, the Kathryn Weit Foundation will create an annual educational Fellowship program. This paid twelve-month fellowship will focus on networking, mentorship, and legislative advocacy for the Developmental Disability Community within the state of Oregon.
Independence Northwest is proud to act as a fiscal sponsor to The Kathryn Weit Foundation as its 501c3 nonprofit status is established.
“In the Shadow of Fairview,” a one-hour documentary examining the history of Oregon’s largest institution, premiered on OPB Monday, December 14th, 2020.
Independence Northwest’s Board of Directors President Linda Gheer is among several high profile self-advocates and former Fairview residents featured in the film. OPB has done an extraordinary job capturing a very difficult chapter in our state’s history while also illuminating the exceptional efforts and vision of Oregonians with disabilities, their family members, and community advocates.
From OPB: “Twenty years ago, the last resident left Fairview Training Center. For nearly 100 years, Fairview was Oregon’s primary institution for those with intellectual and developmental disabilities. Oregon is considered a leader at in-home and community-based services and supports for people with intellectual and developmental disabilities (I/DD). But it wasn’t always that way. For nearly 100 years, the Fairview Training Center housed thousands of Oregonians with disabilities. The facility opened in 1908 as the State Institution for the Feeble-Minded. Most of the first patients were transferred from the Oregon State Hospital for the Insane. For decades, residents were officially referred to as ‘inmates.’”
This July, Starkloff Disability Institute presented an extraordinary two part presentation, Black Disabled Lives Matter.
The two-part series, out of St. Louis, challenges audiences to develop an understanding of how multiple identities – such as disability, race and gender expression – intersect to shape a person’s experience within the structures and systems of our society as well as within each of these communities.
Audience members were offered an opportunity to identify the power they hold in the workplace and community as well as actions they can take to be in solidarity with others. Participants will find resources for developing skills around identifying and challenging their own implicit biases.
The series is divided into two parts:
Part One: A National Outlook from Thought Leaders – Dr. Donna Walton and Janet LaBreck, leaders in the Disability Community, discuss the experiences of Black Disabled Americans and the impact multiple prejudices have on their lives.
Part Two: An Intimate View from Self-Advocates in Our Community – In part two, members of the Disability community – including Aaron Owens, Brandon Morris, Rose Gelin, and Sharon Lyons – discuss their experiences as Black Disabled Americans and the impact multiple prejudices have on their lives.
Twenty years ago today: “A small group of people gathered in front of the welcome sign at Fairview Training Center on February 17th, 2000, to send off the last residents of the institution to new homes in the community.”
We commemorate this pivotal moment in Oregon’s history by sharing multiple articles from The Oregon Clarion, an essential news source for people with disabilities,their families, and community advocates in the nineties and aughts. Follow the link below to read about the history of Fairview’s closure and to check out an extraordinary photo gallery on its history. Established by the Oregon legislature in 1908 as “an institution for the feeble-minded, idiotic, and epileptic,” Fairview housed thousands of children and adults with disabilities for nearly one hundred years.
“As they waved at the departing blue van, smiles beamed all around. These well-wishers, including Fairview staff, self-advocates, Office of Developmental Disabilities Services staff, and community and family advocates were celebrating the culmination of a plan they all had a hand in – the closing of Oregon’s largest institution.”
Imagine a time when there were no supports for Oregonians with developmental disabilities living on their own or with their families. A time where there were extensive wait lists for group or foster care homes. A time when a family had to be in crisis in order to receive supports. A time when some people waited over a decade to receive any services at all.
Rewind two decades and you’re there.
Twenty years ago today, history was made and the face of disability services in Oregon was fundamentally changed.
The families of five Oregonians with developmental disabilities filed suit against the state of Oregon on January 14th, 2000. The lawsuit alleged that Oregon failed to offer services to adults with disabilities in the most integrated possible setting and failed to offer services with reasonable promptness. Staley v. Kitzhaber became a class action, representing thousands of people statewide. The suit opened new doors to Oregonians with disabilities, ultimately paving the way for the development of progressive support services brokerages. The suit was filed just one month before the closure of Oregon’s state institution Fairview Training Center, and a settlement was reached in September of 2000. Implementation of the settlement agreement began on July 1st, 2001.
Hats off to the self-advocates, families, community members, and policymakers who had the determination, strength, and tenacity to press for historic change in the lives of Oregonians with disabilities. What an extraordinary group of visionaries!
Throughout 2020, we will celebrate and illuminate key milestones in Oregon’s disability history. In celebration of the 20 year anniversary of the Staley filing, check out this article by Bill Lynch, then-director of the Oregon Developmental Disabilities Council (now known as OCDD). Lynch’s piece, Waitlist Families Sue State was printed in the April 2000 edition of The Clarion.
Waitlist Families Sue State
By Bill Lynch of The Oregon Developmental Disabilities Council
In a bold move designed to get sorely needed publicly funded services, families of five Oregonians on wait lists for developmental disability services filed suit against the state. Legal assistance to the families is being provided by the Oregon Advocacy Center (OAC), Aid Services of Oregon, and the law firm Garvey, Schubert & Barer. The suit is based on federal Medicaid law which requires that Medicaid eligible individuals with developmental disabilities receive services within a reasonable period of time. The suit further states that the American with Disabilities Act (ADA) requires services to be provided in the most integrated setting.
Four of the families need residential placements for their sons and daughters who require round-the-clock care. These individuals are receiving minimal or no services. Their parents are aging and have various health problems that limit their ability to continue providing 24-hour care.
Jim Staley, one of the plaintiffs, has been waiting for services for 15 years. He has severe mental retardation and health problems. Jim is non-verbal and needs assistance in most tasks of daily living. His mother, Karen Staley, feels a sense of urgency to get him into a residential program. “We are both retired and we want to be here to see Jim transition and support the changes in his life instead of him having to deal with the crisis of our death and changes that would be forced upon him then.”
Diann Drummond needs intensive supports so she can continue to care for her daughter, Molly, also a litigant in the suit. Drummond, who is a single parent, would like to keep Molly at home as ong as possible. Molly is non-verbal and has no self care skills. Currently, Drummond is having to bear the cost for in-home respite care and a full day program in the community. After the suit was filed, state officials agreed to enter into settlement talks. The suit was put on hold for 45 days while the parties meet to negotiate an agreement. If a settlement cannot be reached, the litigants will continue forward with the lawsuit.
Photo Description: Lawsuit families make statements at a news conference. From left around table, litigant Helen Healy and her mother Susan Schrepping, litigant John Duffield, litigant Molly Drummond and her mother Diann Drummond, Michael Bailey, Brena Flota (her daughter Brandie Evans behind her is a litigant), Karen Staley and litigant Jim Staley.
This week marks twelve years since Independence Northwest officially opened its doors as a support services brokerage. Within the first eighteen months of operation, we grew from one employee to fifteen, enrolling 450 Oregonians with developmental disabilities into brokerage services across three counties.
Over twelve years we’ve connected with over 900 customers, 1,200 Personal Support Workers, and 177 Provider Organizations!
Huge thanks to our customers, families, advocates, board members, personal support workers, direct support professionals, provider organizations, community partners, legislators, and all of the truly extraordinary staff members we’ve had the honor to partner with the past twelve years.
There’s no place like Oregon and we’re honored and proud to be part of the fabric of this incredible community.
President Barack Obama looks at a painting by Lois Curtis during a meeting in the Oval Office, June 20, 2011. (Official White House Photo by Pete Souza)
Today marks twenty years since Olmstead – arguably the most important civil rights decision for Americans with disabilities.
Olmstead v. L.C. was filed in 1995. The plaintiffs were two women – L.C. (Lois Curtis) and E.W. (Elaine Wilson), both of whom had been diagnosed with intellectual disabilities and had received institutional care in the state of Georgia. They sued the state, arguing for the right to community-based, not institutional, care.
Following the Olmstead decision, a group of five individuals with disabilities and their families sued the state of Oregon for their right to home and community-based services. The class action lawsuit – Staley v. Kitzhaber – was settled swiftly and paved the way for the creation of brokerages and community-based supports for thousands of Oregonians. Brokerages opened statewide in 2001 and today we serve nearly eight thousand adults with disabilities in every county. In 2013, local community developmental disabilities programs began offering support services to people living in their own or family home as well.
Twenty years on, we celebrate the extraordinary vision of Oregonians who fought for – and won – their right to community-based supports.
When my son Cody Sullivan (AKA Coach Cody), was born with Down syndrome, I knew he would make a great difference in the world. This has rung true for the past twenty-two years, culminating on April 28th, 2018 when he became the first person with Down syndrome to graduate from higher education.
Cody was included in general education from kindergarten through grade 12. He wasn’t shoved into a secluded classroom where they took trips to the park to pick up litter or wipe down tables in the cafeteria. Cody learned alongside his peers – and just by being included – he taught people that having a disability isn’t scary.
When he was a high school senior, Cody’s friends were delightfully sharing where they were going to college. This inspired him to seek the same. Concordia University Portland agreed to have Cody attend classes and work toward earning a certificate of achievement in elementary education. We have been part of the West Coast Think College Coalition, which is focused on creating opportunities for individuals with intellectual disabilities to attend higher education.
This article originally appeared in the Oregon Clarion in October of 2001, written by then-editor Diann Drummond. Her daughter, Molly Drummond, is one of the five plaintiffs of Staley v. Kitzhaber, the class action lawsuit responsible for creating Oregon’s progressive self-directed brokerage system, which currently serves nearly 8,000 adults with intellectual and developmental disabilities.
This is a tale of one of those dreaded supermarket encounters talked about among parents of children with disabilities. The sidelong looks, the stares, and the whispers feel like a stab in the heart.
My daughter Molly is very small for a 23 year-old and her spine is sharply curved over to one side. When we are grocery shopping, being pushed around the store in the basket is her favorite way to go. She giggles and talks her mysterious language while the food is piled all around her. Admittedly, we make an interesting sight.
Sometimes we pass someone who smiles warmly or says hello, and I think, “There is a fine person.”
Most of the time we go about our business, get our food, and head for home, eager to break into the tortilla chips or gummy bears. But on one particular day, that isn’t the way things went.
We had stopped by our local market for a quick shopping trip. This is the place where the clerks chat with us, and we often run into neighborhood friends.
I made my way down the aisles with Molly trailing behind. For some reason that day, Molly wasn’t into basket-riding. Just as I was squeezing the cantaloupes in the produce section, a herd of boys, maybe around kindergarten or early school-age, thundered up. The leader of the little ruffians exclaimed loudly, “Hey, look at her – she’s weird!”
I could see their mother close by, not phased in the least by what I considered to be a serious affront.
That’s when the mother bear came out in me. I scooped Molly protectively toward me. I felt like growling but hurried down the aisle instead. I headed to the other side of the store, thinking we could quickly grab our groceries and head for the safety of home.
However, no sooner had we rounded another corner when we ran into them again. There was a repeat of the earlier scene and that word “weird” again. Mother bear was ready to charge.
I don’t usually admonish other people’s children, but I turned a stern eye on them and said, “Boys, don’t be cruel.”
They stopped and huddled together, wide-eyed and slack-jawed. That’s when I saw mother bear number two streak forward and gather her offspring close. She said in a steely voice, “I will speak to them.” I spoke back with an equally steely voice, “I wish you would.” The face-off!
After a few moments, we turned in separate directions, herding our cubs along, when mother bear number two offered, “They’ve never seen a handicapped person before.”
I looked at the boys, then at their mother, and then back at the boys. I paused. “Would you like to meet Molly?” I asked. They cautiously sidled forward. “This is Molly. She has a disability and she was born with a crooked back. She doesn’t talk, but she can understand what you say. She goes to school.”
One of the four said “hi” to Molly and asked, “Does she go to school every day?”
I replied, “Yes, she rides the bus every day.”
Another offered, “I’m five.”
A few social pleasantries and we were on our way. I felt a bit sheepish, wondering if I’d been too hard on the boys who were pretty young. But the olive branch had been extended, and at least I didn’t swat it away with my paws.
We finished gathering our groceries, went through the checkout stand, and were going out the door when I heard someone call, “Bye.” I turned to see mom and her four boys smiling and waving. I smiled and waived back. Molly and I headed for the car. She was her usual happy self, apparently unconcerned with the incident. I was relieved that the confrontation ended the way it did.
I let out a tired sigh.
Time for mother bear and her cub to head back to their den and hibernate for a while.
The Oregon Clarion Volume 7, Number 3 October 2001
Independence Northwest is a proud sponsor again this year for the exceptional All Born (In) Conference.Registration is open now!
The annual All Born (in) Conference is an exciting day for parents, caregivers, and professionals working to end segregation in neighborhood schools and the community. It’s a day of celebrating community and learning how to use Universal Design for Learning and Best Practices to reach and teach every child. Share, learn and make connections so that we can all go forth to open the eyes of the wider community to the fact that our children are all born “in”. The Conference was founded by Northwest Down Syndrome Association in 2006 in partnership with Portland State University’s joint certification program and the Center on Inclusive Education. It has grown to be a cornerstone resource in the Northwest region, engaging many innovative parents, professionals, and community partners to embrace the gifts of every learner.
Brokerage customers with Family Training written into their ISP can use support services funding to pay customer and non-paid caregiver conference costs. Please contact your Personal Agent with any questions.
Full details about the conference can be found here.
To: All ODDS Staff and Stakeholders
From: Lilia Teninty, Director, Office of Developmental Disabilities Services
This message includes two timely topics important to the I/DD community: DD Awareness Month and the 2018 legislative session wrap-up.
The Oregon Legislature holds its short session in even-numbered years. Short sessions usually include re-balancing budgets and a limited number of policy items. This year’s session wrapped up last Saturday.
Here are highlights of the ODDS-related items:
The Legislature approved an investment for the Background Check Unit (BCU) to cover the costs of providing background checks, as well as to increase staffing levels to reduce the current backlog and waiting time.
Funding for 10 positions for the Children’s Intensive In-Home Services (CIIS) and Children’s Residential programs that were included in the workload model for 2017-19.
Our plan to achieve the required $12 million overall budget reduction was approved. We expect to meet the full reduction through administrative and management actions, including reducing contracts, taking steps to maximize federal funding, and maintaining cost per case. The plan is designed to prevent reductions in services, eligibility or rates in the current biennium (through June 2019).
ODDS’s significant legislation includes SB 1534. It directs DHS to collaborate with the Home Care Commission to establish minimum training standards for home care workers and personal support workers. More than 30,000 home care workers and personal support workers serve more than 25,000 vulnerable Oregonians each month. Developing a highly trained, culturally appropriate, and person-centered workforce requires an investment in training opportunities to enhance the safety, stability, and quality of life for those served in-home through the Aging and People with Disabilities and ODDS programs. This bill is waiting the governor’s signature.
March is Developmental Disability Awareness Month!
Every March, the Oregon Council on Developmental Disabilities (OCDD) takes the lead in helping Oregonians recognize and celebrate DD Awareness Month. OCDD’s 2018 #BetterTogether photo rally will celebrate people with disabilities as valued members of their communities and highlight the many ways in which people with and without disabilities come together to form strong, diverse communities.
We encourage you to participate by sending photos to OCDD of people with I/DD with friends, family members, co-workers, neighbors or other members of the community. You can also post pictures on the Council’s Facebook page. Use the hashtag #BetterTogether18. Details are online on the Council’s website.
Sincerely,
Lilia Teninty, Director
Office of Developmental Disabilities Services
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.
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.
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.
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
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.
Apply now for the PIP class of 2010! OCDD is now accepting applications for the Partners in Policymaking Class of 2010.
Oregon Partners in Policymaking (PIP), is an intensive 5-month leadership course for adults with developmental disabilities and parents of children with developmental disabilities. The program is operated by The Arc of Oregon and funded by the Oregon Council on Developmental Disabilities. It is free to participants.
The PIP program provides participants with the information to understand the past, the present, and the future for people with developmental disabilities and their families. It provides PIP members with the practical skills to positively affect their own lives and influence broader disability policy. Many of the over 180 Oregon Partners in Policymaking Graduates since 1994, have found participating in PIP has been a life-changing experience.
The website of the Oregon Council on Developmental Disabilities has more information about the program and comments from graduates. There is an application which can be completed on line and emailed or downloaded and mailed in.
Oregon Partners graduates have made a huge difference in our state on behalf of people with developmental disabilities. We hope that the Class of 2010 will continue to lead the fight for equality of opportunity, inclusion, and community participation.
United Cerebral Palsy released its 4th annual report on The Case for Inclusion yesterday. The report ranks all 50 States and the District of Columbia on how well they are providing community-based supports to Americans with intellectual and developmental disabilities being served by Medicaid.
Oregon ranks 20th. Our state-specific details are here.
State by state ranking:
1. Vermont
2. Arizona
3. Alaska
4. New Hampshire
5. Massachusetts
6. Michigan
7. California
8. Hawaii
9. Colorado
10. Connecticut
11. New Mexico
12. Delaware
13. Minnesota
14. New York
15. Idaho
16. Pennsylvania
17. South Carolina
18. Florida
19. Rhode Island
20. Oregon
21. New Jersey
22. Wisconsin
23. West Virginia
24. Kansas
25. Washington
26. South Dakota
27. Montana
28. Wyoming
29. Missouri
30. Oklahoma
31. Georgia
32. Maryland
33. Alabama
34. Nevada
35. Maine
36. North Carolina
37. Utah
38. Kentucky
39. Iowa
40. North Dakota
41. Virginia
42. Indiana
43. Tennessee
44. Nebraska
45. Ohio
46. Louisiana
47. Illinois
48. District of Columbia
49. Texas
50. Arkansas
51. Mississippi
From the UCP website on the 2009 report:
Positively, there are 1,536 fewer Americans living in large state institutions (more than 16 beds). This is a bigger drop than seen last year. However, there remain 169 large institutions (4 fewer) housing 36,175 Americans;
Negatively, only nine states (down from 11) report more than 2,000 residents living in large public or private institutions – California, Florida, Illinois, New Jersey, New York, North Carolina, Ohio, Pennsylvania & Texas;
Sustaining the 2008 level, 19 states, but up from 16 in 2007, have more than 80 percent of those served living in home-like settings;
Positively, seven states – Alaska, Arizona, Michigan, New Hampshire, Oregon, Rhode Island, and Vermont- direct more than 95 percent of all related funds to those living in the community rather than in large institutions. Colorado directs a very close 94.6% of funds;
Positively, five states – Idaho, Louisiana, North Carolina, Ohio and Texas – as well as the District of Columbia experienced at least a five percent increase in people served in the community (HCBS waiver).
Negatively, Wisconsin reduced number of people served in the community (HCBS waiver) by more than five percent;
Nationally, 29 states direct more than 80 percent of all related funding to those living in the community;
Positively, 39 states, up from 33, report having a Medicaid Buy-In program supporting individuals as they go to work and increase their earnings; and
In terms of rankings, in total, 15 states had a sizable change in rankings over last two years. Pennsylvania (to #16 from #29 in 2007, dropping one place from 2008) and Missouri (to #29 from #41, dropping one place from 2008) improved the most with Wyoming (to #28 from #17) and Maine (to #35 from #24) dropping the most in the rankings.
Partners in Time is a self-study course that explores society’s treatment of people with developmental disabilities from ancient times until today.
The history of people with disabilities is a powerful story of discrimination, segregation, abuse, ignorance, silence and good intentions that brought bad results. The mistakes, successes and actions of earlier generations have shaped the world we live in, who we are, our values and views of how people with developmental disabilities are allowed to work, learn, live and participate in their communities.
It is up to each generation to decide what to do with their knowledge of the past…whether to learn from these experiences to change the future or ignore these lessons and continue on the same path. This course has been created to help you understand the complex history of people with developmental disabilities. In this course, you will:
Learn how people with disabilities lived, learned and worked from ancient times to the present.
Recognize ways in which history repeats itself and how those abuses continue today under new names.
Connect early glimmers of progress with current initiatives.
Learn about some of the people throughout time whose efforts changed the course of history for people with developmental disabilities.
Explore recent progress and celebrate the groundbreaking efforts that are creating a more just, inclusive society.
Apply these lessons to create a vision for a future that embraces all people, regardless of ability.
Twenty years ago today: “A small group of people gathered in front of the welcome sign at Fairview Training Center on February 17th, 2000, to send off the last residents of the institution to new homes in the community.”
This week marks twelve years since Independence Northwest officially opened its doors as a support services brokerage. Within the first eighteen months of operation, we grew from one employee to fifteen, enrolling 450 Oregonians with developmental disabilities into brokerage services across three counties.
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. 
United Cerebral Palsy
Text taken from the Partners in Time website: