Kelly Quinlan has a first-hand understanding of how Oregon brokerage services help in establishing and maintaining a good quality of life for adults with intellectual disabilities. A prolific writer, with over 50 short stories and author of a self-published book of personal memoirs, Kelly is a vivacious 36-year-old woman known for her bubbly personality and unique style of dress, which includes wearing legwarmers year-round. She loves spending time with her best friend, playing board games and making movies to post on youtube. Energetic, with a great sense of humor and a variety of interests, Kelly says, “There is a lot of flavor in my life right now!“
But about 7 years ago, Kelly’s life was different. She was on a waiting list for brokerage services, and though she was connected with some social services like Section 8 Housing and Social Security Income, she did not have access to individualized supports for individuals with intellectual disabilities. “There was not a whole lot going on–working on my stories—but that was it. I was lonely without having any friends,” she recalled. When she entered brokerage services in 2008, Kelly was surprised at the variety of supports available, and pleased with how dramatically her life was enhanced. She now receives training in independent living skills, assistance with communication due to hearing impairment, support with social skills, and help with medical management. She uses two independent contractors and contracts with a day support activities provider organization for community inclusion. She describes her life as balanced and thriving, quite different from her adult life before receiving services. “If I just had funding for one thing, I don’t know what I would do. I would have to advocate and say, I need more funds for this,” Kelly says as she recounts her providers and lists her goals and support needs. “It would be hard if I didn’t get help.”
Kelly has found the design of brokerage services flexible enough to access services catered to her specific support needs. Kelly has severe food allergies, so was thrilled to find a provider who helps her shop, read food labels, find recipes, and cook. In the past, if she accidentally ate something she was allergic to, she said, “I would get really sick. And it does take me a while to get back on my feet after I am contaminated with the food that I am allergic to.” A favorite recipe she discovered with her provider is a gluten-free vegan clam chowder that “tastes like the real thing, only with coconut cream and sweet rice flour.” This brokerage service “really helps me out,” she says. Another unique service Kelly has access through the brokerage is the ability to attend the national Turner Syndrome conference each year. “I have Turner’s. I like to go to these conferences that happen every year. And the brokerage pays for that, which is really nice.” While Kelly saves money to afford a plane ticket and hotel room, her brokerage service plan covers the cost of her conference registration so that Kelly can network with hundreds of people affected by Turner syndrome and go to workshops and presentations given by healthcare providers and other professionals. Another part of her brokerage plan that Kelly states is very valuable to her is transportation services that allow her to get places she cannot access independently. The individualized services outlined in Kelly’s annual support plan are entirely unique, and as Kelly points out, different from other brokerage customers. “I live out on my own—not everyone I know lives on their own. Not everyone that I know has food allergies, not everyone I know has Turners, or the same kind of medical conditions. I don’t know anybody else that gets the same kind of services that I get,” Kelly says.
Part of Kelly’s busy schedule includes working at her uncle’s restaurant, Cheryl’s on 12th, where she spends about 15 hours per week. “I’m a dishwasher, that’s basically my title,” says Kelly, laughing. “I sometimes come out and help with washing down tables, bus tables, and sometimes I’m a hostess.” She says that she loves “working along side the people that work here…. to work with people that I’m familiar with. Most people know that I’m Eddie’s niece, so sometimes that’s when they really straighten up. And sometimes I do chuckle about that!” She prides herself on “the sense of accomplishment” that comes from helping at the restaurant. When asked what she likes most about her employment, she said, “Working. Just having a job. Being out in the community and contributing what I can do. And helping my uncle.”
Kelly is an avid user of social media. “I like posting all the stuff that I do, posting activities with On-the-Move, saying what I did at work… my family likes that I post things on Facebook so that they have a good sense of what’s going on.” She also posts personal memoirs and original creative writing on a self-publishing internet site, and makes short movies that she posts on her youtube channel. She observed that her interest in communicating her experiences through these different media increased as she has become more involved in her community, particularly through her community inclusion program. “When I started going to On-the-Move I thought, that’s interesting… this part is interesting to ME. And it’s something special that happened to me.” Having interesting, novel experiences that are independent from her family give her rich experiences that Kelly defines as key to a good quality of life.
When Kelly heard, in the spring of 2015, that there were possible cuts proposed that would negatively impact her brokerage and services, she decided to go to the state capitol to speak to her legislators directly. “It was really interesting, the building gave off the impression that I am big, large, and I mean business. I had never been there before. But inside it was more low-key and it felt like you can address your problems and someone will listen to you.” While there Kelly spoke to her representative about the importance of having people with disabilities present in the community, and how important it is to have community inclusion supports. “It’s good… being in the community with other people that are disabled. If you cut our programs, there’s not going to be any community living for people with disabilities.” She says she felt the advocacy effort was effective. “Oh, I definitely got some people’s attention. I was talking to a group of people!”
Excited to continue with advocating for individualized services and support for adults with intellectual disabilities, Kelly has already planned another trip to Salem and is joining the Board of Directors of a local Portland nonprofit. She said she would make the following recommendations to anyone just entering the brokerage system: “I would definitely tell them about On-the-Move, I would tell them that if they have any medical issues then tell your PA. If you need assistance with financials, speak up, don’t be shy, because that’s what they’re there for. When I first started, I wasn’t quite sure what to ask, or what was even available. I wasn’t quite sure if I could get help with learning how to cook, and what kinds of things would help me out when it came to community, things like that. The medical stuff is especially important,” Kelly says, referencing transportation services, adds, “and going to places that I cannot get to.” Having access to services that are uniquely individualized to her specific needs and circumstances has been life-changing for Kelly. “Yes, it’s really important!” she says.
You can read Kelly’s stories on fanfiction.net (fanfiction.net/u/37688/kellyQ) and wattpad.com (wattpad.com/user/kellyq204) and see her videos on her youtube channel (youtube.com/user/kellyq204).
– Text by Molly Mayo