RONAN — Jake Janssen was sleeping in last Saturday morning. But his parents, Rich and Julie, were wide awake at their kitchen table, talking about his future.
“He’s 23,” said Julie Janssen. It's an age when most young adults — including his younger sister, Jenna — are setting up their own independent lives. But Jake’s entry into adulthood has been delayed.
Autism, epilepsy and Type I diabetes have kept him under Julie and Rich’s care, largely within their Ronan home. But now, “we’re getting older,” Julie said, “and it's definitely time for him to be in a situation where he's going to be able to function somewhat on his own.”
That commonplace goal has sent the Janssens down an ambitious path. In recent months, their effort to help Jake met rejection from state health officials. But it’s also driven them to start their own facility for Jake and others like him.
“We just realized that if we were going to make this happen, we had to do it ourselves,” Julie said.
She and her husband are no strangers to autism’s challenges. Those began with Jake’s diagnosis as a toddler. “He was a difficult child from the get-go, but more so after he was diagnosed,” Julie remembered.
Individuals with autism fall somewhere along a spectrum of severity. But they typically harbor intense interests in specific topics and strong devotion to routines, and struggle with everyday social interactions.
To an outsider, Jake’s symptoms can seem dire.
“He communicates with his own form of language,” one that's often simply repetition, said his daytime caregiver Elliott Adams. “You’ll say, ‘Hey Jake, you want to go to the store?’ and he’ll say, ‘Go to the store.’”
It’s up to Adams to discern his true intent. “I understand his language very well. … His tone and his mood are his giveaways. He is very emotional in his language.”
A longtime friend of the family, Adams is well-versed in that language. The skill serves him well. Both Janssens work full-time, Julie as a fourth-grade teacher and Rich as head of the natural resources department for the Confederated Salish and Kootenai Tribes. During the days, Jake is under Adams' care.
He’s seen plenty of up sides to Jake’s personality — love for his mother, a deep, infectious laugh, “a ton of empathy” — but also room for him to mature.
“One of the biggest difficulties with Jake is the fact that he’s been a homebody,” he said. “Some days my one goal of the day is for him to go out and socialize, and even just get out and catch some Vitamin D.”
That’s not always popular with his client. “If Jake doesn’t want to go anywhere, there’s really nothing I can do. He’s quite a bit bigger than me and he’s well aware of that.”
The difficulties don’t end there. “Jake is very self-centered,” Julie Janssen acknowledged. “He believes the world revolves around him.”
Adams phrased it more starkly: “He has an established dominance over his parents.” In his view, Jake’s demands for new toys — especially Thomas the Tank Engine paraphernalia — are becoming an issue. So is his diet.
Beyond that, Adams said, “there are very few people that Jake gets along with, and I think that can be an issue. … Being challenged to expand your social boundaries a little bit is something that’s never been available for Jake.”
Since 2013, when Jake completed a special ed program based out of Ronan High School, Rich and Julie have been eyeing group homes for disabled adults. That type of living situation, they hope, could broaden his horizons and tame his worst impulses.
“I think that we kind of create a obstacle for him,” Julie said, “because we're all he knows. … I just think that he is going to flourish in a situation outside of our home, with the possibility of [a] positive transition” to a more independent life.
His autism isn’t their only motivating factor. Jake has suffered from epilepsy since he was 5. “He's injured himself a few times with seizures,” Julie Janssen recalled. Surveillance cameras around the property, linked to a monitor in their kitchen, let her and her husband know if he’s in danger. But even with these aids, “you don't leave him alone.”
Between minding Jake’s epilepsy and keeping him away from the large crowds he dislikes, “we don’t have the luxury of doing things a normal family would do,” Rich Janssen said. Parties and sports are usually off the table. They’ve missed friends’ weddings.
For both their sake and Jake’s, they sought a place for their son in one of Montana’s 156 licensed “Community Homes for Persons with Developmental Disabilities.”
That hope led them to the state’s mental-health bureaucracy — a familiar place for the Janssens. Over the years, a Medicaid waiver has covered Adams' salary and Jake’s many medications and treatments. “We've been blessed in that way,” Julie said. “We'd probably be bankrupt by now if we did not have that [waiver].”
But to place him in a home, they would need more cash. Adams draws a $24,900 annual salary. A 2016 study funded by advocacy group Autism Speaks, using data from California, found that group home care for an autistic adult costs nearly $44,000 per year.
Chuck Council, communications specialist for the Montana Department of Public Health and Human Services, declined to comment on the specifics of Jake’s case. Julie Janssen said their goal of placing Jake in a group home would require a $110,000 Medicaid Waiver cost plan. (She and her husband attribute much of the price to administrative fees).
In March, they sought an increase in his cost plan. Council told the Missoulian in an email that “each individual in the waiver has a specific funding amount allocated which can be used to meet his/her assessed needs.”
But the Janssens’ situation, for all its challenges, didn’t merit more state aid.
Council listed several questions that the department asks before approving a cost plan increase. It assesses whether a caregiver can properly care for an aid recipient, and if that recipient’s health and welfare demand a change.
That’s not the case in Jake’s situation. While the Janssens don’t think they can help their son reach his full potential, “we're still alive and not sick or anything like that,” Julie said.
“Knowing that either we die or become terminally ill” for Jake to receive more aid, she added, is “a hard pill to swallow.”
They say their case manager cited recent state funding cuts, which have stripped $95 million from the department’s biennial budget and triggered a wave of mental health service closures and cutbacks, in rejecting Jake’s request. Council, however, denied that these cuts affected the process.
Whatever the cause, the Janssens no longer place their hopes for Jake in the state.
“All the state did was energize us,” Rich said. “Re-energized us to the fact that we need to do something.”
The couple had mulled starting their own facility before. Suddenly, they saw that idea as their best path forward. Proactive Living Facility was born.
The Janssens’ problem is twofold: Not only would the state not fund Jake’s placement in a group home, but there’s too little care tailored to adults with autism.
“I think that they’ve definitely picked up that there is a lack of specialized care,” Ann Garfinkle, an associate professor at the University of Montana, said of the Janssens.
Garfinkle, director of UM’s Montana Autism Center, explained that “adults with autism do better with smaller settings, so just them and a roommate, whereas in group homes you might have eight to 10 clients, which might not be an optimal setting for a person with autism to live.”
Caregivers also need to adapt themselves to autism, said Shirley Willis, executive director of Kalispell’s Lighthouse Christian Home. “What I see with the autism spectrum, rather than other disabilities, is the social disconnect, and that is very, very hard to teach staff how to handle.”
To bridge that disconnect, she continued, “we train [staff] continuously.” Necessary skills include “positive-reinforcement behavior management, social disconnects, de-escalation, amongst all the other typical training: medication distribution, CPR, first aid.”
The need for these services is set to grow. According to the Montana Autism Education Project, the number of autistic students with an individualized education program in public schools grew from 372 in the 2005-2006 school year to 1,632 in 2017-18. Nationally, the Centers for Disease Control estimates that 1 in 59 8-year-olds has autism, a sharp rise from 2004's estimate of 1 in 166.
Much of this change could reflect increased diagnosis, rather than an actual rise. But even so, UM’s Garfinkle sees a coming surge in demand for autism care. “We know that we’re at the start of those kids entering adult service, and within the next five years, we’ll start to see that huge influx hit the adult service providers in a big way.”
The Janssens aim to absorb a bit of that influx, planning out a Ronan home for those with autism
Three months since their rejection from the state, they’ve assembled an eight-member board for Proactive Living Facility, registered it as a 501(c)(3) organization, and set up a website. Within the next year, they hope to make it reality.
“I'm thinking we would start out with a four-bedroom [facility],” Julie Janssen said, with possible future expansions to six bedrooms and, eventually, other locations.
It would have to be either newly built or thoroughly renovated, licensed from the state, and well-staffed to meet future residents’ needs. “We would need to have an administrator for the facility, licensed, we would need to have an on-call nursing staff … and then just the personal care attendants that would work with the people individually, and that would include things like cooking meals, [and doing] laundry.”
And, Julie Janssen made clear, Proactive has to offer more than beds and nursing.
“We don't believe that putting them in a facility and not giving them the opportunity to grow would be worthwhile. Our hope is we could get clients in there that could be comfortable and situated, where they could learn, they could get some job training.”
She pointed to Lighthouse Christian Home, whose residents raise livestock and vegetables for their own consumption while earning minimum wage, as a model for Proactive. “One has to feel productive if you're going out to the chicken coop and getting your own eggs for breakfast,” said Willis, the home's executive director. Doing this work, and earning a paycheck, “is very, for the lack of a better word … normal. That's what we try to serve, is to try to create just a wonderful, purposeful life.”
But creating these opportunities won’t come cheap. Willis estimated the annual budget for Lighthouse, which has 12 full-time residents, at $500,000. The Proactive website projects that just acquiring and preparing a six-person residence could cost that much.
The new home’s finances remain hazy, Rich Janssen said. Funding “will be a combination, hopefully, of private donations, grant funding opportunities, and then the clients’ state cost plan.”
Asked about fundraising, Rich Janssen chuckled. Julie Janssen’s voice tightened.
“It has been kind of difficult,” she said. “The donations have not come in yet. … I think once you get a concrete plan in place, people are more willing to step forward.”
Their plans got firmer this past Monday, when the board of the local Seventh-day Adventist Church agreed to let them spend the summer evaluating their 5,400-square-foot building. Julie already thinks it’s an “awesome location.”
Much work remains in assessing this site, raising funds, hiring staff and securing the necessary licenses. But to give Jake some semblance of an independent adult life, the Janssens can’t wait any longer.
“Time is of the essence for us,” Julie Janssen said. Jake has lived with his parents and sister for all of his 23 years. “I think that the longer you wait” to move him elsewhere, “the harder the transition will be.”
She, her husband and Adams agree that Jake has many strengths to share with the world, from artistic skills to a warm smile. However, they know that he can’t bring them out alone.
“You have to look for the future for them,” she said. “We have to be their advocates.”
To learn more about Proactive Living Facility, visit proactivelivingfacility.org.