March Newsletter

News Topics

• DD Awareness Month #DDAwareness19

• Individual & Provider Highlight

• DD Advocacy Days in Salem

• Build A Movement on March 8th

• Customer Survey on Gaming Events

• Resources for Individuals & Providers

March is DD Awareness Month! 

Help us spread awareness about developmental disabilities this month and every month. Follow along with us on Facebook to help us support, advocate for, and empower individuals and families experiencing developmental disabilities in Oregon and beyond. Please use #DDAwareness19 and #support #advocate #empower in your own social media posts.

In honor of DD Awareness Month, we’re excited to be sharing the story of Chris and William, an individual and a provider team who volunteer together to collect and give hygiene products (toothbrushes, shampoo, soap, etc.) to people experiencing houselessness in Portland. Learn more about their community service by reading their story below.

Thanks for reading! Questions or comments? Let us know. Email Kristine at kolson@communitypath.org or call (503) 935-5243 ext. 228. We value your feedback.

Enjoy the rest of your week!
-Team Community Pathways

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Image of artwork by Gary Murrel including the words #DDawareness19 and Developmental Disabilities Awareness Month. Image Source: https://nacdd.org/ddam/

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Feature Story: Individual and Provider Volunteer to Give Hygiene Products to Portland’s Houseless

Chris and William recently met with our staff to share their experiences as an individual-customer and support provider volunteering together to collect and give hygiene products to people experiencing houselessness in Portland.

William, who works as a direct support provider, explains that he started serving people living without a house in Portland by using his own money to buy hot meals for people who might not be able to afford one. With time, his attention shifted to hygiene products because he wanted to provide longer-lasting support to people. By providing people with hygiene products they are able to stay more clean and healthy despite not having direct access to basic amenities.

 Chris, who is involved in many service projects through his church, quickly joined William's efforts when he learned about them. The volunteer duo share that with the support of Chris’ church congregation they were able to collect enough hygiene products to fill over 100 small backpacks to create what Chris refers to as “hygiene packs.” Targeting areas around the Burnside Bridge and Pioneer Square, Chris says they were able to give most of the hygiene packs away in a short span of time. The pair note the high demand for hygiene products among people living without a house in Portland highlights the larger housing crisis the City is experiencing.

Asked if they are still collecting products, or interested in continuing this project together, Chris and William both say yes. They would like to continue providing support to their community in this way, and welcome donations and support in their efforts.

Asked if he’s working on other service projects, as well, Chris shares that he regularly volunteers with his church. Primarily, he helps sew and assemble sanitary pads that are donated by the church to an organization in Africa that provides support to women in need. As an aside, William points out that it would be helpful to include disposable sanitary pads in the hygiene packs they make for people living in Portland.

What products do Chris and William currently collect for the hygiene packs? In travel sizes, they collect: tooth brushes, tooth paste, mouth wash, floss, shampoo, soap, razors, hand sanitizer, sunscreen, bottles of water, and snacks. Q-tips, toilet paper, nail clippers and disposable sanitary pads are also appreciated. They are also open to suggestions.

If you would like to learn more about Chris’ and William’s service project(s), or would like to donate toward their cause, please let us know. Contact Kristine at kolson@communitypath.org or (503) 935-5243 ext. 228.

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DD Advocacy Days in Salem

Image description: A group of advocates sitting around a conference room listening to a presentation on legislative advocacy at the Oregon State Capitol in Salem in February 2019./Oregon DD Coaltion at https://www.facebook.com/ORDDCoalition/photos

Join us at the next DD Advocacy Day in Salem on Tuesday, March 5th (10am - 2pm). Community Pathways is joining the Oregon Developmental Disability Coalition's GO! Project Advocacy Team and self-advocates to help support DD rights and services during the 2019 Legislative Session. Come learn about legislative advocacy and how you can make your voice heard!

Sign up to get the GO! Project Bulletin (newsletter) for the latest advocacy updates. Visit https://orddcoalition.org/go-project/

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Upcoming Event: Build A Movement Meeting

Image description: Build A Movement event flyer.

Community Pathways is proud to help sponsor and support the next Build A Movement (BAM) meeting of self-advocates on March 8th. BAM participants are self-advocates living in the Portland area who work together to address issues related to DD Services, Housing, and Healthcare. To learn more about BAM and how to get involved, contact Jennifer Knapp at knapp@cvision.org or (971) 347-7825.

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Customer Survey on Gaming Events

Do you like playing board games, video games, Virtual reality, etc.? Let us know by taking a short survey on gaming events.

Community Pathways invites individuals-customers to take a short 5 question, confidential survey to let us know if you’re interested in joining a gaming event or group. Our team would love to host a game night or gaming event here at Community Pathways. But, first, we need your feedback!

The survey asks 5 questions and takes approximately 5 minutes to complete. You can take the survey online at https://www.surveymonkey.com/r/FPWPD9Z

Request a paper copy to be mailed to you, with a stamped return envelope, by emailing Kristine at kolson@communitypath.org or calling (503) 935-5243 ext. 228. You may also contact your PA who can request the survey be mailed to you.

Deadline: April 15, 2019

We look forward to hearing from you. Thank you!

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Resources for Individuals and Providers

Please let us know if you have additional recommendations for resources Community Pathways can share with individuals-customers and providers online. Thank you! Call (503) 935-5243

Find a Provider (or individual to support)

OHCC Registry and Referral System: https://or-hcc.org/Welcome/Login?serviceGroupId=2

Food and Shelter

211 Info: http://211info.org/

Oregon Food Bank: https://www.oregonfoodbank.org/

Health and Safety

Additional Needs Registry: https://www.portlandoregon.gov/police/article/586275

Arts and Culture

The Gallery at Seven Corners Collaborative (2475 SE Ladd Ave, Portland, OR 97214)

Public Annex: http://www.publicannex.org/

PHAME Academy: https://www.phamepdx.org/

Activity Groups and Recreation

Off the Couch Activities: http://www.offthecouchevents.org/

Adventure Without Limits: https://www.awloutdoors.org/tripcalendar

Adaptive & Inclusive Recreation (City of Portland): https://www.portlandoregon.gov/parks/39830

Tech and Gaming

Guardian Games: http://www.ggportland.com/calendar/

Free Geek: https://www.freegeek.org/

Fidgetech: http://fidgetech.org/

Do you have more resource recommendations? Please help us share them with the community.
Contact Kristine at kolson@communitypath.org or (503) 935-5243 ext. 228. Thank you!

2019 DD Advocacy Days - Make Your Voice Heard

Join the Oregon DD Coalition GO! Project Advocacy Team in advocacy during the 2019 Legislative Session. They are available to give you information, training, and support on Advocacy Days in Salem.

The Oregon Legislature meets in Salem each year for the purpose of lawmaking. The Oregon DD Coalition and Oregon Council on Developmental Disabilities organize a DD Advocacy Day for each month during the legislative session to provide an opportunity for people with disabilities, family members, advocates and others to travel to Salem and talk with legislators face-to-face about critical issues that affect their lives. When you attend a DD Advocacy Day, you are encouraged to:

• Schedule visits with your legislators.

• Wear something yellow to show unity on advocacy.

• Stop by before and after your visits for important advocacy updates!

Before you go, find your State Senator and State Representative at www.oregonlegislature.gov

2019 DD Advocacy Days, 10AM to 2PM

Tuesday, January 22: Oregon State Capitol (900 Court Street NE Salem), Room 167A

Tuesday, February 12: Oregon State Capitol (900 Court Street NE Salem), Room 167A

Tuesday, March 5: Oregon State Capitol (900 Court Street NE Salem), Room 167A

Tuesday, April 30: Oregon State Library (250 Winter Street NE Salem), Room 103

Tuesday, May 7: Oregon State Capitol (900 Court Street NE Salem), Room 167A

Tuesday, June 18: Oregon State Capitol (900 Court Street NE Salem), Room 167A

For more information about DD Advocacy Days visit, https://www.ocdd.org/legislative-advocacy-the-go-project/

Sign up for the GO! Project Bulletin for critical advocacy updates: https://orddcoalition.org/go-project/

Kaaren Londahl, Self-Advocate of the Year

Recently named Self Advocate of the Year by Oregon Self Advocacy Coalition (OSAC), Kaaren Londahl is known throughout the community for the important work she does to advocate for the rights of individuals with a developmental disability in Oregon.

Photo of Kaaren Londahl in northeast Portland.

Within minutes of meeting with Kaaren, it’s clear why she’s been named Self-Advocate of the Year. Her experience and network are as robust as her enthusiasm for self-advocacy is infectious.

Kaaren is an active board member at OSAC and Independence Northwest, and a member of the PHAME Arts Leader program. She also works at OCDD and PHAME.

“I am a strong leader,” Kaaren states matter-of-factly, smiling as she hands me her OSAC business card and points out her title: Advocate at Large.

Self-determined but not self-important, Kaaren recognizes that by sharing her story she is able to encourage more people to become advocates—“and strong leaders too.”

What or who motivated you to become a self-advocate?

“My mom,” says Kaaren. "In the 1970s, my mom noticed there weren't services for people with disabilities." Kaaren's mother, Pauline Londahl, responded to the lack of support she encountered by establishing an organization called Exceed Enterprises in Milwaukie. “She started a workshop for people [with disabilities] to learn life skills,” Kaaren says, explaining that her mother wanted individuals with a disability to have an opportunity to learn life skills, like cooking and cleaning, as well as to participate in creative and social activities, like playing music and going bowling. Sharing more about her mother's advocacy work, Kaaren notes: “Mom was on the board that closed Fairview.”

Why is it important to be a self-advocate?

“We don’t want programs to go away,” she says, noting that funding for support services can change.

Aware of this possibility, Kaaren emphasizes that, "people need to speak with their legislators," to advocate for the services and programs that assist them in living a full life in the community.

When asked what topics she and other self advocates address with legislators, Kaaren shares that, "we attempt to educate legislators about issues that matter to us," including: housing, employment, relationships, and transportation.

In her call for more self advocates to attend Legislative Sessions in Salem, Kaaren points out that some people who would like to attend these sessions are unable to because of limited access to transportation. “If anyone from [Community] Pathways wants to drive people to Salem, that would be great,” Kaaren says, using her network to attempt connecting people with the support they need to achieve their goals.

As Advocate at Large, what are your main responsibilities?

Kaaren shares that she recently joined the Oregon Council on Developmental Disabilities (OCDD) on a trip to Pendleton, Oregon where they met with individuals to learn about their experiences with support services. Their trip, she explains, is a part of a statewide effort to learn about support services from the perspective of individuals with a developmental disability in Oregon.

What have you learned from individuals about their support services?

"A lot of people find it difficult to ask for help," Kaaren says. “You have to ask to get ahead.”

She explains that when asked about their experience with support services, individuals expressed that they do not always know what questions to ask in order to receive the support they are seeking. With this observation, Kaaren pinpoints a frustration many people, regardless of their abilities, face when seeking help: Not knowing who to ask for help, or what questions to ask, in the first place. Kaaren says that more clarification about what to expect from support services would be helpful to individuals and their family members.

What other obstacles do individuals receiving support services face?

"Parents," Kaaren notes. “Parents can sometimes get in the way of their kid.” Even when the 'kid' is an adult, Kaaren explains, a parent or family member can become an obstacle to the individual's support services, “because they think their kid isn’t able to do certain things.” 

When asked what advice she has for parents and family members of individuals with a developmental disability, Kaaren says: “Let your kids do what they want to do.” She pauses before adding, “In a safe way. But let them do it.They have to learn."

From meeting with individuals across the state, Kaaren notices that the number of individuals who attend these meetings is quite small. Asked why this might be, Kaaren says that individuals do not show up to events because they either do not know about them, their providers do not take them, or they lack accessible transportation.

What would you suggest be done to address these concerns and help improve services?

Kaaren notes the following ways brokerages can help improve the experience of support services for individuals and their support networks:

• Host Brokerage 101 events to educate people about brokerage support services, so they learn what questions to ask.

• Educate providers about support services, as well as self advocacy groups and events.

• Promote programs like RideWise, which trains individuals to ride public transportation.

How would you describe the support services you get through Community Pathways?

“I like my services. They're great. They help me. They really help me,” Kaaren says. "You have to navigate things," she continues. "They help me grow. They help me learn about what's out there in the world."

When asked what she values the most about her support services, Kaaren says it's the communication she has with her PA. “It’s nice having another person to talk to,” she shares.

“If you complain,” she adds, “[support services] won’t work. You have to speak up. I may not get everything I want, but I have to work with [Community] Pathways, with my PA Sarah, to get what I do get. It’s important to speak up.”

Photo of Kaaren Londahl standing next to an orange biketown bicycle in northeast Portland.

How would someone interested in self-advocacy learn more about it?

"They should contact me,” Kaaren says with a smile, pointing to her business card.

"OSAC is seeking new members," she adds. [Learn more at www.askosac.org]

What would you say to individuals who want to get involved in self-advocacy, but are shy or anxious about attending meetings and events?

“They should contact me,” Kaaren says, pointing to her business card again. “Joining a group gives people a chance to get to know more people who have self-advocacy experience," she adds. "We will cheer lead them on to use their own voice."

Of course, some individuals may still find it difficult to attend self-advocacy meetings for different reasons. When asked if individuals can attend meetings and events with the support of a family member, friend, or provider Kaaren says, "Yes, that's fine," but stresses that, "self-advocates need to speak up for themselves. The provider or parent should not speak up for them. We need to speak up."

What is your advice for self-advocates preparing to speak with legislators?

• Stick to one question or topic per speaker.

• Stay on topic.

• Only speak for a few minutes. "If you speak for too long, people will stop listening."

• Meet with your team afterwards to discuss what went well and what did not go well, and make the necessary changes to improve.

[Join the 2019 DD Advocacy Days to gain more information, training, and support. Learn more at www.oregoniddcoalition.org]

Recently named Self-Advocate of the Year, what are you working on now?

With the midterm elections on November 6th drawing near, Kaaren says she is busy volunteering with Disability Rights Oregon (DRO) to help educate individuals with a disability about their right to vote and the supports available to help them fill out and cast their ballots. [Easy Voting Guide]

“We want people to live an everyday life like anyone else without a disability,” Kaaren says about her experience volunteering with DRO to get out the vote. “I want to follow in my mom's footsteps, because I’m a strong leader.”

Throughout our interview, Kaaren makes the mission and motivation underlying her work as a self advocate clear: “I want people to live the way they want to live.”

Kaaren lives independently in Northeast Portland with her dog. Her sister Dolly and nieces are an important source of support in her life and motivate her to advocate for her own rights and the rights of all people who experience a disability.

Congratulations on being named Self-Advocate of the Year, Kaaren!

-The Community Pathways Team