Meet Jackson Fogelman

In 1990 Claudia Walker and Bill Fogleman were expecting their second child.   “We did not know Jackson would be born with a disability. The pregnancy was almost identical to the first, down to how many days overdue, weight and length of the baby and length of the labor,” Claudia recounts. “Jackson obviously did not pass his APGAR scores that are performed on infants at birth. And he had a heart murmur. For the first 6 months we thought his main problem was his heart.” When Jackson did not meet early developmental milestones, required heart surgery and two operations on his skull, the family was devastated. In addition, they faced uncomfortable scrutiny from doctors who were never able to provide a comprehensive diagnosis. “The pediatrician didn’t know what to do. No other specialist we saw knew what to do. Because he did not have a known syndrome, we were left on our own,” they recalled. The family was offered no support.

“The only reason I got Jackson into the county Developmental Disabilities system was on the advice of another mom who had a daughter with Down Syndrome and attended the same pre-school class as our older son. By this time, Jackson was 18 months old,” Claudia remembers. Jackson’s developmental disability, with significant medical and cognitive implications, impacted every aspect of their lives. Claudia and Bill were consoled through this difficult time with their son’s smile and pervasive happiness. As one doctor commented, “Your son is probably going to always need help, but with that smile he is certain to get the help he needs.”

While Bill worked full-time for the U.S. Postal Service, Claudia kept a part-time job that offered the flexibility to schedule her working hours around Jackson’s care and medical appointments. But when management changed and Claudia was expected to resume a typical 40 hour work week, she had to quit her job of 18 years because she had to be there when Jackson got out of school. “It was very depressing back then to think of leaving Jackson anywhere I could trust, partly due to his issues around feeding. It was more trouble than it was worth to show someone how to care for him.” Claudia points out, “I’m what’s considered a natural support. But I had to quit my job.” Jackson is now a cheerful 24-year-old who is mostly nonverbal and requires significant supports with many aspects of daily life including mobility, communication, hygiene, and safety. Bill and Claudia are grateful for the adult support services Jackson now receives through Independence Northwest brokerage. In particular, Jackson’s parents emphasize that they are pleased to have found services that match Jackson’s needs and interests. “The fact that someone has a disability doesn’t mean that they need the same thing that Jackson does—there might be something that was fine for others, but not for Jackson,” says Bill. “Jackson’s community inclusion program is a place where Jackson “is safe, he’s getting exercise, he loves it. I’m glad that we found a place that’s good for him…We’re happy that he can go to a place like this… He found a really good fit.” Jackson attends this program five days per week. Additionally, Jackson also receives respite care and attendant care supports through the brokerage.

Finding quality, trustworthy providers for respite care and activities of daily living support has been an ongoing challenge for Jackson and his parents. “That’s an issue for everyone,” says Claudia.   “We’re pretty private and we’re pretty careful. He’s not verbal, so he can’t tell us what happens when he goes out with someone. So it has to be someone really good, and someone that we really trust. That’s our issue,” says Bill. “There is not this huge pool of trustworthy, together, nice people, reliable people, where you can say I would be perfectly comfortable with my son being in their care. So it is mostly friends and family,” states Claudia. Claudia and Bill, and other families they are in touch with, have found that many independent contractors that work through the brokerages are only available short-term, and often move on to other work, “So we’ve been fortunate to have a few people that we can count on, friends and family members” who help with Jackson’s support needs. In fact, due to this shortage of providers, Claudia helps out a family friend as a support provider to their daughter with a disability. Bill and Claudia, living in urban Portland, said that they wonder how families in more rural communities, with fewer resources, can cope.

Overall, the family is extremely appreciative of the Oregon brokerage system. “It has worked really well for us,” they said. “The brokerage system was working great. This (past) year has been a time of upheaval,” Claudia said in reference to the extensive revamping of brokerage service categories, assessments, rules, and processes that have been implemented by the State of Oregon. Claudia and Bill are especially concerned about the new monthly “hours cap”. Whereas previously Jackson’s service hours had an annual limit and could be used flexibly during the individual months within his contract year, the new “hours cap” limitation developed by the Oregon Office of Developmental Disabilities allocates only one-twelfth of his annual hours per month. This reduced flexibility does not take into account individual circumstances and according to Claudia and Bill, negatively impacts their family. Claudia and Bill had planned to take a week-long vacation together but are considering changing plans because Jackson’s caregivers would need to work an above-average number of hours during their absence, which is prohibited by the new regulation. Half-joking, Bill recommends that policy makers take their annual allocation of vacation time and split it up into 12 month increments. “If you have 24 days of vacation, then you can only take 2 per month. That’s not reasonable. How is that reasonable?” he asks. Claudia says that the random decision-making by people who don’t understand the system, has been very challenging over the past year. “Why are you taking the parts of the system that are working well and changing them?”

Claudia and Bill consider themselves lucky. Their older son, Samuel, is in the U.S. Air Force, and their younger son Jackson, an adult who lives at home, has the supports he needs to have an active life.

Unlike the early years of their parenting, Bill and Claudia are able to share Jackson’s care more equally now that Bill is retired. They value their close friends and family members who help with Jackson’s support needs, and have found the brokerage system relatively easy to navigate. “Once you have settled into this life, I feel so lucky,” says Claudia. Bill adds, “Everyone likes Jackson. What’s not to like? He has a very happy disposition. With everything that we’ve gone through, he wakes up happy and goes to bed happy.”

– Photo and text by Molly Mayo