Paul Allen gets his hair and beard trimmed at Connections Salon in NW Portland but he goes to the salon more frequently to visit with clients while his cousin, Tim Newth, cuts and styles their hair. Paul says he likes to “Chat. Talk to people.” One customer is Governor Kate Brown, who Paul’s cousin has known for 18 years. “The Governor knows Paul—she’s known him for years. Do you remember how excited the governor was to see you?” Tim asked Paul. Paul answered, “Kate Brown—Salem.” Tim said, “She wanted to give you a hug… but you missed out on the cue!” Paul and his cousin Tim then joked about whether or not they were gossiping.
Paul is a 52-year-old customer of Independence Northwest brokerage, where he has received services for 3 years. In addition to having an intellectual disability, Paul has cerebral palsy and is legally blind. Paul began living with his aunt, Pamela Dyer, in 2003 after a difficult period that followed the death of his grandmother, who raised Paul. “From 2003-2008 we were not in a brokerage, and then someone knocked on our door and said that Paul was eligible for brokerage services. I did not know what that was or that he was on a list.” All of Paul’s care was dependent on his aunt and her four adult children who all have close relationships with Paul.
Since entering brokerage services Paul has had many new opportunities and his communication skills have flourished, according to Pam. “When he first started…[in brokerage services] he would not interact with the other clients… but now, he loves, or interacts with, all of the people in the program and talks about who they are… he loves it.” Without support, Paul has difficulty initiating interactions and engaging in activities, Pam says, so he benefits tremendously from the programs he has access to through brokerage services. In particular, Paul has thrived in active, community-based group activities where his physical and social health have blossomed.
Pam has been extremely pleased with the quality of Paul’s programs. When beginning brokerage services, Paul contracted with two Day Support Activities programs. One of Paul’s programs closed shortly after Paul began, due to financial difficulties, which was upsetting to Paul and Pam. Another program had a waiting list, but an opening came for one day per week and Paul now attends three days per week. “We were waiting a long long time to get the other 2 days,” Pam recalled. During Paul’s first year in brokerage services, Pam coordinated a daytime birthday party for Paul at a park, inviting people from both his DSA programs. That day stands out as one of the most memorable in Paul’s life. “That was the most fun I have ever seen him have—he had so many friends there.” Paul’s experiences being integrated into the community contrast starkly to his days when he does not receive services. When support is absent, “It’s like he’s in limbo. Paul never thinks of an activity to do on his own…without some other person engaging him, he would sit. But those 3 days when he can catch the LIFT [to go to his community inclusion program], he is busy. He is alive!” Pam says emphatically. “That is his life!”
In addition to social opportunities, Pam compliments Paul’s programs on careful safety management, excellent parent/family communication, and positive behavior management strategies since Paul can tend to over-worry and become easily stressed. “Paul is a worrier—he’s a worst-case scenario fanatic and constantly fretting, and they handle it beautifully. Paul has been seriously ill and I was contacted and brought in. I just have every confidence in On The Move and can’t say enough about them,” Pam stated. Because of Paul’s communication limitations, “He might not be able to tell me anything about his day,” but his current program sends home a daily journal page with pictures and comments. “So I know Paul has been everywhere and done everything. There is no more social person on the planet. He has done everything in Portland!” When asked about his program, Paul said, “Fantastic!”
An example Pam gave of how Paul’s life has been enriched through community participation is when, in May 2015, Paul and his group read original writing at a public event in front of over a hundred people. Paul introduced himself and gave the page number of his entry published in the Write Around Portland Anthology. Since Paul does not read, his aunt read for him. She said “His piece is titled My Favorite Food and it’s in chapter 5, and the chapter name Popcorn, And That’s All is from his piece. He got laughter and great applause. He is really funny when you get him up to a mike speaking off the cuff.”
In addition to DSA supports, Paul receives support with activities of daily living, or attendant care, from his aunt. Paul can bathe and dress himself, but needs help with almost everything else, his aunt says, including reminders to initiate tasks he is able to accomplish independently. When asked how his aunt helps him, Paul said, “I do the garbage every morning and every night. My aunt says, Paul do you want to do the garbage? And I say sure.” When talking about meal preparation, Paul said, “I never go to the stove to make my own food! I burned my finger!” After becoming provider for Paul, Pam began serving 6 other families, “and that all happened because of Paul,” Pam said. “In 2008 they began paying me $9.75 for 20 hours per month, and then in 2013 there was a new contract with the union… and then in 2014 they started paying me for many more hours.” Pam thinks the increased number of hours and wages are entirely fair, since she has assumed full responsibility for all of Paul’s in home support needs, and the increased income allows her to “pay the bills.” Even so, she has not been able to find a provider to help Paul with some special supports related to Paul’s cerebral palsy. She has taken steps to qualify her adult children as providers for Paul. “Now I’m 72, not in perfect health, and one of these days, Paul may need one of my children… so that is my goal– that we won’t have to go outside of the family for the kind of supports that Paul needs.”
The family describes Independence Northwest brokerage as a place where they have had many productive interactions, and attended many trainings. In fact, their first visit to INW was for a presentation about changes to support services. Pam said, “In that first visit, I saw a community. Parents were obviously in supported, long-term relationships with INW and each other. They were active in lobbying Salem legislators to obtain and protect needed services for their family members with disabilities.” They have used the brokerage not only to access Paul’s services, but as an information source and link to personal and professional connections, and they now refer others searching for information about the brokerage system. “I have brought PSW’s [Personal Support Workers] met through SEIU [Service Employees International Union], our union, to meetings at INW. The content is always presented orally and visually and with handouts. My time is never wasted and my questions are always answered, whether about eXPRS [a new online billing format] or more advances in the system.” Pam describes Paul’s Personal Agent (PA) as a “lifesaver” since she helps with new complex billing procedures that Pam finds complicated and difficult. “We have never had one single complaint and we are going on three years. We’re solid advocates of INW,” Pam explains.
Paul’s services, combined with full participation in family activities, give Paul an opportunity to engage with the world around him. Without these natural and paid supports, Paul’s life would be empty, Pam says. “You know, he can listen to music and watch tv as a solo activity, but other than that he is alone with his thoughts.” Paul’s family wants to ensure that he is never one of the “invisible citizens in society,” those individuals with disabilities who were institutionalized in previous generations. “Never once was he ‘put away’ when growing up,” Paul’s cousin Tim remembers. “He went where we went—the whole way down the line he is there with us.” Paul’s cousin Jamela Smith says that due to his upbringing Paul is “the most nice, considerate, sweet person.” Tim adds, “I think for our family it provided empathy and sensitivity to someone with special needs—absolutely.” Described as the center of attention at family gatherings, Pam says, “Everyone loves Paul. He has always been a joy in our lives.”
– Text by Molly Mayo, photos courtesy On The Move Community Integration and Molly Mayo