Source: US State of Oregon
embers of Oregon’s intellectual and developmental disabilities (I/DD) community gathered at the Breaking Barriers: Life Beyond Labels conference in late April. The Central Oregon Disability Support Network (CODSN) hosts the annual event in Redmond. The network’s executive director, Dianna Hansen, said, “It’s important for us as families, people with disabilities, service providers and educators to come together and learn from each other.”
I went with coworkers from the Office of Developmental Disabilities Services (ODDS). We enjoyed learning from 58 presenters. They included self-advocates, family members, care professionals and other allies of the I/DD community. They shared their experiences at 32 sessions. Seventy-five vendors had exhibition tables. Twelve vendors were self-advocates who sold their art.
Hansen said attendance was at full capacity: 600 attendees! The top four words people used on their evaluations to describe their experience were encouraged, connected, excited and inspired. If you want to go next year, save the date for April 21, 2026.
Here are 10 takeaways from the conference:
1. Words matter.
Ramonda Olaloye is the assistant superintendent of the Oregon Department of Education’s Office of Enhancing Student Opportunities (OESO). She opened the conference with a speech. Olaloye works to create an education system where every child reaches their full potential.
Olaloye spoke about some challenges of I/DD service system. She has two daughters. Her youngest has autism. One day at school, a teacher asked her, “Why can’t you be like your older sister?” After that, Olaloye noticed her daughter acting out at school. A self-described “ferocious advocate” for her daughters, Olaloye spoke to the teacher. Reflecting on this experience, she said:
“Educators shape experiences with their words. Because their words — our words — carry weight. Our children deserve to be recognized as individuals, not compared and not dismissed. Breaking barriers means challenging the way we communicate, the assumptions we make and the systems we uphold. And, it starts with seeing each child for who they are, not who we expect them to be.”
2. Presume competence in everyone you meet.
Hansen spoke to me about a similar experience. Her daughter has Down syndrome. When they’re out at a restaurant, servers often ignore her daughter and ask Hansen, “What does she want?”
Her daughter is a second-year culinary student. She cooks her own meals. She graduated high school with honors.
People often presume someone who experiences I/DD can’t speak for themselves. Hansen encourages everyone to presume competence in people. This is one of the main values she hopes people took from the conference: “Giving that dignity to people — that they are able to answer and make their own decisions.”
3. Forget the traditional meaning of independence.
Keynote speaker Alva Gardner challenged people’s understanding of independence. “Independence doesn’t always mean doing everything yourself,” she said. “We, as a system, need to forget about that traditional definition of independence. No one lives a life that is 100 percent independent of other people 100 percent of the time. We are all interdependent in some way throughout our life.”
Gardner has been a public speaker since she was 8 years old. She runs her own company, The 4*3 Perspective LLC. She works with organizations to make systemic changes that support all people, especially people with disabilities. She was the first person with a developmental disability to become a certified person-centered thinking (PCT) trainer.
Gardner has cerebral palsy. She spoke about the supports she gets. She works with personal attendants for 100 percent of her personal care. The supports that she uses free her to go about her day, care for her family, and run her business. She asked attendees what kind of supports they use in their lives: haircuts, car services, childcare, doctor visits, etc. Then, she redefined independence.
“Independence comes from living a self-directed life and utilizing the supports that are available to you in order to do that,” she said. “In the person-centered thinking training, we ask people to identify what is important to them and how they want to be best supported, and get really specific on how they define supports for themselves. As a system, when truly taking a person-centered approach, I believe we need to start by being intentional about how people define independence for themselves. What does independence look like and mean for that person?”
4. Teach self-advocacy at a young age.
Both keynote speakers encouraged parents to teach independence and self-advocacy to their children.
Olaloye gave her daughter age appropriate roles in her Individual Support Planning (ISP) meetings. This is a meeting where individuals plan their services and supports each year. In elementary school, her daughter was part of a conversation about moving from one-on-one instruction into a classroom where an aide helped the entire class. Olaloye has been using the ISP process to help her daughter learn to express her needs. She has given her daughter bigger roles in her ISP meetings as she aged. Now a sophomore in high school, Olaloye’s daughter is prepared to manage her own supports when she goes to college.
5. Make advocating for yourself easier. This takes preparation.
Gardner spoke about the challenge of constantly advocating for oneself: “Having to share our preferences with all of the various DSPs [direct support professionals], case managers, personal care attendants, etc. that come in and out of our lives … It gets incredibly tiring and incredibly draining, and frankly boring. I don’t want to have to repeat the same thing over and over again. I have better things to do.”
One way she eases this burden is by creating one-page descriptions for each aspect of her life. She has different versions for home, work, and other situations. On them, she describes her support needs, preferences and what’s important to her about that aspect of her life. She said that doing this “is especially important when you might just be learning what those [preferences and desires] are and how to communicate those for the first time.” She recommends updating this information as one’s needs change.
6. Use the new Self-Advocate Guide to Intellectual and Developmental Disabilities (I/DD) Services to help plan your services.
ODDS and the Oregon Self-Advocacy Coalition (OSAC) shared a new tool: the Self-Advocate Guide for I/DD Services. They created it to make planning easier.
The guide is a workbook. It takes self-advocates through the service planning process. It asks questions to help people communicate their desires, needs and goals. It helps people lead their service planning.
OSAC Executive Director Gabrielle Guedon spoke about the planning process: “It’s about looking at what you really want or don’t want in your life. We’re going to continuously change. Every year you have an opportunity to change. I know it’s a hard process that we have to do, but there are opportunities to put in what you want and don’t want. Be honest and clear.”
Find the guide on the ODDS website. You can download it. It’s available in a number of languages. Parents, family members and case managers can also use the guide to improve their support of self-advocates.
7. Don’t let the bullies stop you from pursuing your goals and dreams.
Felicity Woods, a self-advocate and CODSN board member, also spoke about the Self-Advocate Guide. Woods shared how some at her school misunderstood disability. She, like many children with I/DD, was bullied in elementary school. She said learning to share one’s story — the successes and barriers one faces — is an important part of self-advocacy. She encouraged people to use the Self-Advocate Guide.
“I want to make my own choices and decisions about what I want,” Woods said. “It’s up to me and you, individuals, to make the choices for what we want.”
Speaking of bullies, Guedon added, “Don’t let a bad experience stop you. Let it fuel you.”
8. Help organize other self-advocates.
Felicity Woods and Jordan Ohlde are members of High Desert Self Advocacy. This is a peer group of self-advocates in the Bend/Redmond area. They presented, “Growing Stronger and Time to Thrive.” ODDS employee Ryley Newport joined them. They spoke about how to expand and empower self-advocacy. To do this, High Desert Self Advocacy created a Planning Alternative Tomorrows with Hope (PATH) plan.
PATH is a creative planning tool. Two trained facilitators from ODDS led the group through the PATH process. They used graphics and discussion to help the group envision their future. Then, they worked backwards from that vision to form a plan to reach their goals.
As a result, High Desert Self Advocacy spoke at Breaking Barriers. They will also be at the Oregon State Capital on June 12 to lobby for disability rights. They are presenting at The Arc Oregon’s Self-Advocacy Convention that week.
Woods and Ohlde encouraged self-advocates to reach out to them at High Desert Self Advocacy. They want to help their peers form self-advocacy groups around the state. Connect with them via their Facebook page.
9. Model accessibility.
CODSN modeled accessibility at the conference. Hansen said CODSN made the conference accessible to people of all financial means. CODSN provided scholarships for 176 self-advocates and 130 families. They also made the space physically accessible to all. A sensory room gave people a space free from the noise and crowd. A changing room gave attendees a private space for personal care.
The conference also modeled how to provide language access for Spanish speakers. Interpreters Isabel Ramirez and Joy Christian, a team from Grapevine Aliados, provided Spanish and English interpretation for the last three conferences. They said the conference offers a full track of sessions in Spanish. Attendees can sign up for the Spanish track when they register. They can also request Spanish interpretation for English-language sessions.
10. Self-advocacy never stops.
Self-advocate Jordan Ohlde was one of eight individuals that sued the Oregon Department of Transportation. They wanted to make a crosswalk in their neighborhood accessible to all, including those who use wheelchairs. It took time and perseverance, but in the end, they won. The street is now passable to all.
“Self-advocacy never stops. There’s aways a different start, another path. Your job never stops,” Ohlde said. “A lot of kids are told, your voice doesn’t matter, when really, your voice does matter. You just have to figure out how it matters to you.”
Upcoming self-advocacy conferences in Oregon
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