Becky Lukens knows first-hand the joys and challenges of raising children with intellectual and developmental disabilities. She’s a retired teacher, currently working as a job coach with young adults with disabilities, and the parent of a teenage son with autism. She’s also the chairperson of SOUL, a new non-profit organization in Sisters, Oregon. SOUL stands for Sisters Opportunities for Unified Living, and their mission is to improve access to support services for people with disabilities in their town.

“Parenting a neurotypical child is hard enough, but when there is a disability, the challenges are so much greater. Each of our kids is different, but a lot of what we deal with is similar,” said Lukens. “Learning where to turn for help is easier when we can educate each other on what’s out there how to go about accessing these resources.”

 

Finding their focus, and finding a partner

SOUL began in 2017, when one Sisters resident, Josh Nordell, began gathering a few parents to talk and help each other navigate the many different resources for housing, education, employment, and finances. As Lukens explained, “There’s so much to know, and all the acronyms are like another language to learn.”

Several of the parents have children who are currently transition students, or have graduated from the transition program in Sisters. The group would get together to share common concerns and accomplishments. During their conversations, one specific topic kept coming up: housing. Their teenage children would soon be ready for more independent living, but the Sisters community lacked options for supported group homes. Housing for young adults with IDD became their first focus. They learned that purchasing property was a huge reach for their small organization, yet they found a partner in a Portland-based non-profit organization named ALSO.

ALSO (Advocates for Life Skills and Opportunities) manages several group homes in Portland, as part of their overall mission to support independent living for people with developmental challenges. When ALSO purchased a small group home in Sisters, their presence gave hope to the SOUL group that more housing options could be developed. There’s no official partnership, but SOUL provides a local connection with the Sisters community for the Portland organization. Both work to create ways to help families access resources and information, including housing.

 

Reaching out to the whole community

SOUL’s first community outreach effort was the Resource Roundup, an open house with booths for any organization, agency, or business offering help for people with IDD. To sweeten the deal, they added in an ice cream social, for an atmosphere where people would chat and network.

“We want to listen to our community and hear what people are looking for. There’s more to life than jobs and housing, and we want to help all of our community members lead rich, full lives,” said Lukens. From game nights to art classes to carpooling, small efforts can make a large impact on a person’s quality of life.

SOUL is reaching out to the whole community, not just to the families looking to access support services for IDD. They want to raise awareness of job coaching, both as a resource for transition students and as a career opportunity for anyone in the community. A job coach works one-on-one with a person with disabilities as they begin employment. Job coaches help with training and learning the new routines, and they stay connected as long as needed.

 

Advice for new parent groups forming

What advice would Lukens share with other parents looking to start a support group? Here are four suggestions for bringing together your community:

  • First, just start talking. Open conversations where parents get real and feel supported are the first step to forming a network. “We were able to do this because we’re all very honest about our challenges. There are no secrets and there is no shame about what is really hard in our lives,” explained Lukens.  “We put it out there, and then we help each other figure out how to manage life day to day.”
  • Second, connect with the schools. Teachers are the gateway to meeting other parents, said Lukens. They know the families and can identify who would be interested in working together. Once kids are out of the school system, connecting with them becomes more of a random event.
  • Third, be open to partnerships. No single group can do everything. Lukens recommends focusing on achievable goals, and looking for partners who are doing work that complements your goals.
  • Finally, remember that small wins are just as important as big wins. Success can come from simply supporting each other, or creating a game night, or helping a family make a connection. Anything that helps people with IDD into a closer web of community is a big win for everyone!

Learn more about SOUL at SistersUnifiedLiving.org
Follow them on Facebook at SOUL: Sisters Opportunities for Unified Living