By Ann Sullivan
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.
On April 28th, graduation day at Concordia University, Cody was the first person with Down syndrome in Oregon to cross the stage and receive his certificate. As he crossed, his many friends erupted in love and joy with a standing ovation.
Today, Cody works as a Teacher’s Aide at a local charter school.
Learn more about the West Coast Think College Coalition here and listen to Cody’s interview on KXL FM News 101 here.
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
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.
Lilia Teninty, Director
Office of Developmental Disabilities Services
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.
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 firstname.lastname@example.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.
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.”
Thanks for Kathryn Weit for the link.
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:
4. New Hampshire
11. New Mexico
14. New York
17. South Carolina
19. Rhode Island
21. New Jersey
23. West Virginia
26. South Dakota
36. North Carolina
40. North Dakota
48. District of Columbia
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.
Via DAWG Oregon and UCP
Text taken from the Partners in Time website:
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.
Click here to start the course.