2021 Seeds of Change – Community Conversations

Who is present? What’s your WHY? Why do you connect with The Arc Oregon? Where should we focus in the next year? What have we learned through the pandemic?
Bob and Lynda Roberts, Diana Stadden, Casiopeia Friberg, Cari Davis, Jennifer Buss, and Alice Massey

Parents and family members (siblings) of persons experiencing disability

Finding out what others who work with individuals with IDD are experiencing and solutions/resources;
would like to learn more about what The Arc Oregon does around legislative advocacy;
Washington State still has institutions and there is interest in how Oregon managed to close all of the institutions;
interest in Oregon’s community systems designed to serve persons with IDD – how these might be replicated in other states;
interest in how available services are in Oregon to persons with varying levels of support needs; resources for persons in crisis;

Workforce shortages – DSP, behavior supports, etc. If this issue isn’t resolved, nothing else will follow. DSP’s need living wages and benefits – the same benefits often currently available to management.
Case management issues – case managers can be difficult to reach; lots of turnover; lack of training and time to get to know and serve persons; caseload numbers that are too high; more case managers needed – this should be a focus of some of that money received from the federal government for COVID relief.
Too much focus is placed on developing new forms and procedures, rather than putting resources into people receiving services; when new sets of forms/procedures are introduced, lots of time is spent learning and filling out new forms, information gets lost/missed; doesn’t feel person-centered; change fatigue with new forms. Paperwork can burden staff who need to be more available to directly serve people.
Affordable housing

In Washington State, there is an Advocacy Day held every Wednesday during legislative sessions. This year, being forced to do these virtually, many additional people have been able to participate who were not able to do so previously. Similarly, virtual Town Hall meetings were held and reached many additional people. Post pandemic, these activities will likely be held with a blend of virtual and in-person activities.
Being able to engage with individuals online has made some services more accessible to some folks.
Staff members providing services have been able to adapt to offering services online and/or by phone; post-pandemic, we will be able to offer services in a more person-centered way, offering in-person, phone, and online services, based on what individuals want.
Using online options opens up more opportunity to reach people in rural areas of the state where travel distances can be vast.
In-person, face-to-face meetings still remain very valuable to many people – would still drive long distances to attend in person vs. online.

Cici, Nicholas, Missy, Anna, Jen D, Pam, Edith

Works in the field, experiences a disability, wants to bring awareness and advocate; Family members with disabilities, wanted to be able to serve the underserved; sibling with a disability, passionate about the work of The Arc; experience a physical and developmental disability; passion, vision, values of families; works at local chapter, advocates for Spanish-speaking families and assisting with navigating systems

The passion that The Arc has. The Arc works to provide education and advocacy – how to advocate, provides tools to do so. The advocacy is amazing – building relationships with Senators/Representatives. It is family-driven and always has been. Families have a voice – very family centered rather than a provider perspective. Allows us to partner with provider associations, DD Coalition, DRO. It is driven by the people we support and families. It is grass-roots and to be able to be affiliated with The Arc Oregon and The Arc US. Without the Oregon chapters and the advocacy they provide, the DD system would look very different. Leading change in communities.

While working from home have been able to contact legislators and advocate for more ways for people with IDD to get affordable housing. Better education within our public schools for people with IDD. Return of the family network funding – they are vital to the DD service system. Making sure that we are at the table – people with IDD are often overlooked when discussing the topic of disabilities

Easier to do trainings using Zoom because no need to drive to location. It has brought greater attention/focus to inequities that have existed – legislatively locally and nationally. A lot more cross-collaboration. With schools opening we may see a more flexible education system. We have seen more funding from OHA, United Way. More support for communities that were previously siloed.

Kaaren, Tom, John, Diane, Sharyn

To be involved and to help families, kids and adults get what they want in the community.
Parent of a daughter with DD.
Board member.
Person with DD accessing services as an adult.
Learn more about the brokerage system. Learn more about these types of events and how they benefit people with DD and the community.
Staff of The Arc local chapter.
Opportunity to connect with people with DD who may not connect to the community through formal DD services. Offering more community based opportunities with hands on support to meet real needs, not perceived needs.
Parent of son with DD.
Employee of The Arc.
Learning from families and people with DD and helping others feel independence through accessing resources in the community.

Assessing needs of the DD Community related to pending legislative bills that perhaps ODDS is not watching or supporting.
Addressing the asset limits that effect ability of people with DD to access employment, especially as minimum wage is increased.

Communicating effect of general legislation on the disability to legislators and their staff.
Connecting with federal legislators to support priorities of the DD community.
Moving outside of the DD community to communicate more about interacting with people with DD.
Having more resources outside of the DD community.
Community based support for preparing for a job.
Addressing differences between small town communities and tri-county communities for people with disabilities.
Improving response times of CDDPs

Good opportunity to update planning for the future. Used some resources from The Arc to help with future planning.
Interconnections of technological resources allows more collaboration across generational lines.
Additional attention to accessibility for people who communicate in alternative ways, such as listening devices, live recordings, etc.
Technology has brought together more geographically diverse groups without need for extensive travel.

Wonde, Vicki, Patie, John, Rebecca

Pursuing to be a behavior professional- Immigrant experience can connect with other support providers and passion to help people by continuing to learn and give back to community.
Involved with disabilities whole life, as a sibling, parent-daughter, grandson: Passion- training for people to provide appropriate support for people with disabilities- First/aid/CPR training for all community members, including people. Explore opportunities for The Arc programs to support people with disabilities.
Parent of a child who experience IDD and is looking into mental health resources.
Attorney’s hire paralegals who experience disabilities, went to college and has skills in this area. An accomplished writer, published book in 2007 and wants to see others accomplish things they dream of. Voc rehab counselor who said “she won’t be able to accomplish and she has proven them wrong.

Cici- OSNT program- Trustee from Grandfather’s estate. Looking for? Job resources, but previously gained support with housing and is seeking support for ramps to ensure accessibility without having to pay for this out of pocket. The Arc is currently supporting with legal connections. Assistance of what to do when trust funds run out? What other financial resources are available.
Access to what is going on in the greater disability community. So I can know how to best advice daughter, who is a young adult- Supported Decision Making and developing a Trust through the OSNT program. State and national connections, trends, legislation-up to date and knowledgeable about what is going on. Always looking for updates and resources from The Arc Oregon to share resources with families throughout the state.
A lot out of The Arc both professionally and personally- small, but mighty group of staff. The Arc is really looking at increasing independence, ability for people with disabilities to share their talents and dreams. Continuing to work towards supporting and building independence and realizing individual strengths. The Arc Oregon- the last few years has been a place where connections with The Arc Chapters throughout Oregon. Working on helping the small chapters throughout the state that can in-turn support more people. Positive relationship and can rely on The Arc Oregon and feels we are moving in the right direction to help local Arc chapters throughout the state.
I’m new to The Arc program- conference attendee, very familiar with the OTAC Program- Behavior Supports. Training Center- provides free training for First Aid/CPR. Find an opportunity to network and connect with trainers, bring policy change, network with other professionals and be a resource for the community. Recognizes disconnect on county level and aims to partner and collaborate- finished PHD program!!!! (Congrats). Wants to continue to connect – mission and vision statement aligns with values. “Any organization that puts people first- I’m behind it!”

Community: Understand the culture- each community is different! Culturally- what is the home, individual culture; Continue to advocate for support person wages, connecting resources to individuals, continue to make sure we are listening to the most important person, which is the person with disability. Learn how to help them dream and support their wants.
Affordable,accessible housing with transportation, jobs- consider a list of professionals who experience disabilities to help promote their skills and talents for the community to access!

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