“The self-esteem is unbelievable for people who have never looked someone in the eye to be able to stand up.” — Patricia Schulz, CEO of The Arc of Ventura County
The Arc of Ventura County has a program called MOVE, and it lifts people up. Dreams are being made reality. The Arc helps give the dignity of standing to many of those in the county who have Down syndrome, autism and/or cerebral palsy. It’s a tremendous service. The program’s participants can start to accomplish everyday tasks that were previously difficult for them, like brushing their teeth and using the restroom. Those in the program are helped greatly, and society is changed for the better.
The dedicated, caring staff form intimate relationships with the program participants they help. They receive little monetary compensation for their efforts. Many are forced to work multiple jobs to make ends meet. 2008 hit The Arc hard, and a round of state budget cuts and freezes is still deeply felt. A recent budget increase has not made ends meet, and now the program is asked to take on more responsibility than ever. Despite the strain, work goes on.
Changing lives for the better
It’s a quiet Thursday morning at The Arc’s facility in Santa Paula, and a small, cranelike “solo lift” is hoisting one of the MOVE program’s participants into place. He is placed into a walkerlike “pacer” that allows him to move about outside of his wheelchair.
MOVE is but one of the programs The Arc supports. For instance, a group from The Arc started Project R, which helps campaign against the use of a derogatory word beginning with the letter R for the mentally and developmentally disabled. Even with programs like Project R, MOVE’s results make it one of The Arc’s most extraordinary endeavors.
The Arc’s literature describes the program thusly, “Mobile Opportunities Via Experience is a program that employs adaptive equipment to help people who use wheelchairs to acquire and maintain skills to sit, stand, walk and transition. People who have never stood are taking their first steps in ‘pacers’ with outcomes that are life-changing.”
Patricia Schulz, chief executive officer of The Arc of Ventura County, explained that all the MOVE program’s participants have a doctor’s clearance authorizing their participation. In addition to helping the disabled with personal mobility, she pointed out that the program helps achieve personal dignities that most people never need to think twice about.
“The self-esteem is unbelievable for people who have never looked someone in the eye to be able to stand up,” Schulz said.
Schulz pointed out that many people in wheelchairs can develop head and neck issues subsequent to a lifetime of having to look up to talk to people. MOVE’s mission to raise people from their chairs and provide mobility helps alleviate this.
Holly Wallace, The Arc’s MOVE program coordinator, explained the program’s goals for its participants.
“My job entails helping people get back to walking, stand-up toileting, and the program teaches functional skills for transitions,” Wallace said, “sit to stand, stand to sit, standing, walking and toileting.”
She further explained that there are few other programs like this in the area. She went on to tout the program’s equipment, especially the pacers.
“There’s no other walker like it. It’s completely adjustable,” she said.
Connie Coleman, whose son Zachary, 26, has cerebral palsy, loves The Arc.
“From the first day we were there, he was home,” she said. “Zachary has really come into his own from being at Arc. He’s treated as just Zachary, not as a person that can’t walk or can’t talk very well or can’t do this or can’t do that. Can’t is not in the words over there.”
Among other things, the program gives her son an opportunity to explore his gift for painting. She explained that the ability to get around in a MOVE program pacer has been wonderful for her son.
“When you see someone in a wheelchair get up on their feet for the first time, everybody reacts. They just cheer, and it gives him a sense of accomplishment and pride,” she said.
Fillmore resident Crystal Endicott is similarly grateful. Her adult son Tad also has cerebral palsy. Tad has been with The Arc for many years, and recently started taking advantage of the MOVE program. In addition to helping Tad walk for the first time in a great while, the program has assisted him with some day-to-day tasks.
“It’s probably straightened his legs out a good 2 inches. It makes him move his legs a little more, because it was getting where he couldn’t move his legs at all. We’re hoping it will strengthen them enough that he can stay using the men’s facilities, because he was getting to where it was getting hard for him to get up to do that. His legs were too weak.” Endicott said.
The physical benefits of the program for Tad and Zachary have been enormous, but their mothers were sure to mention the social benefits as well. Endicott mentioned that after high school many people with disabilities similar to the MOVE program’s participants have to stay at home by themselves during the day. Their families have to work, go about daily life, etc., and their disabilities prevent them from leaving the house with the ease of a those who are not disabled.
“They’re no different than we are. Except they can’t just go off to the grocery store or take off in the car. Without Arc, I think they would be just lonely and unable to do anything,” she said.
Coleman was adamant about how important these programs are to people like her son.
“Without The Arc, so many of these guys would just be wandering the streets. They wouldn’t have any direction, they wouldn’t have any goals,” she said. “It would be like you and me not having anything to do all day. Imagine that. Imagine not having a job, or not having friends or community.”
Wallace related a memorable story she had about one of the program’s longtime participants.
“He wanted to just be able to go and brush his teeth. Apparently in his house, he’s in a wheelchair, the sink is too far away for him to reach from a seated position,” she said.
She explained that he was able to meet his goal with the aid of a pacer.
“That was a huge eye-opener for me,” she said, “that it wasn’t about big-picture stuff so much as it was about these little tiny things.”
She happily recounted how they took him to get his hair done at a salon, and the great time he had having the experience for the first time.
“There was this little old lady that was sitting next to him,” she said. “He leaned over and he said ‘Hey, hey, lady; look, I’m just like you. I’m in the chair’ and I just started balling my eyes out.”
Talking to Coleman you are struck by the amount of good The Arc does for people.
“Our lives would suck without The Arc,” Coleman said with a wistful laugh before again turning more somber. “As an older parent, I mean I know Zach is one of the youngest ones there, but as an aging parent, if something were to happen to me, at least he’s got The Arc. He has his home.”
Despite all the good they do, The Arc and its employees are suffering under some very difficult financial strains.
The politics of helping, Post-Recession
Everyone in California is still living with the effects of the Great Recession. Its aftermath has been felt up and down the state, and The Arc is no different. Tony Anderson, The Arc of California’s former executive director, pointed to how much funding has dried up. He cited a combination of cuts and freezes that have left The Arc of California and its subsidiaries out over $1 billion since the 2008 recession began. A recent budget increase from the state has helped, but it is still hundreds of millions short, collectively, of its pre-recession budget.
This budgetary strain comes at a bad time. The Arc is set to take on more responsibility as state-run facilities are being closed down.
Anderson explained the problems with the closing of state institutions.
“The institutions are such an old model that no one would build one today. That’s not the way we would treat anybody,” he said. “They’re not able in this state to provide the services up to the standards that the feds require, and they’re losing a lot of money.”
He points out that this has led to money being transferred from the older centers into community-based models. The Arc, which are closer to federal standards, the key difference being that the older way of doing things involved segregating the developmentally disabled from broader society whereas the newer model involves keeping the disabled in their communities.
“That’s what The Arc does, is help people to live with other people and just become part of the fabric of their community,” Anderson said.
Anderson went on to explain that The Arc was recently given its first rate increase from the state in about 20 years.
“Well, if you think about it, just during the recession alone, the years of the cuts, not even the freezes but the cuts, that was a billion dollars,” he said. “We just got back about $325 million, so we’re about a third of the way there on what we lost.”
To put these numbers in context with the other parts of the 2016-17 state budget over $53 billion is provided for all health and human services, over $51 billion for K thru 12 education, over $14 billion for higher education, and over $13 billion for corrections and rehabilitation.
“We [The Arc of California and other similar organizations and programs] got around $325 million from the federal government to help stop collapse as we see it,” Anderson said. “On top of that the federal government will match money, so that doesn’t even come out of the state funds.”
Anderson claims this federal matching would be there for a great deal of the state funds needed to return to a pre-recession funding level.
The Arc does have a fundraising foundation. Joseph W. Paul, the executive director of The Arc Foundation of Ventura County, explained the foundation’s role in the program.
“It’s the fundraising arm of the whole operation, so we’re separate from Patty’s side that does all the services, but everything that we make goes to Patty’s programs,” he said. “What we do is have a couple of thrift stores, and then we’re working on other events and things to raise funds to support all of The Arc’s programs, including MOVE initiative.”
Schulz emphasized just how important the foundation is.
“We rely heavily on the foundation to raise money,” Schulz said. “We’re really fortunate that two of the thrift stores are good businesses, and they generate about 10 percent of our operations budget.”
Schulz explained that despite the foundation’s good work, 85 percent of the budgets still comes from the state, in particular the Department of Developmental Services. The rest, as she explained, is a mix of donations and grants.
“It’s not enough, mainly because we’re underpaying people,” she said. “We have really progressive and exciting programs, but it’s on the backs of the people who support people with disabilities. I mean, they’re accepting subpar wages.”
Budget problems have effected other parts of The Arc besides just salaries. Schulz explained that another big problem recently has been recruiting. Paul added that a consequence of recent budget shortfalls has been a necessary layoff of some nurses.
Schulz explained that most of the recent increase will be going directly to employees.
“It will be short. The bulk of that funding increase is a wage pass-through so that it has to go directly to our direct support staff who really deserve it,” she said. “The wages are really wrong for the people who support people with disabilities.
The employees they made it clear how much they enjoy their jobs and care for the program’s participants, but they are obviously affected by the financial hardships they endure.
Passionate but impoverished
The Arc of Ventura County’s employees are a compassionate and dedicated lot. They work closely with the disabled, and often form strong bonds with them. Malcolm McNeil is a direct-support professional who is on the front lines of The Arc’s mission. He is clearly dedicated to his job, and even finds the time to continue his education.
“Actually, right now I’m going to school to become a special-education teacher because I love working with this population,” McNeil said.
When he begins to tell you about his life, his love for helping others shines through. He got his start working with his father caring predominantly for people with Alzheimer’s disease and dementia.
“I really liked it. I’ve always really liked helping people,” he said.
Eventually his father retired and McNeil was working a night shift at another job when he heard about The Arc from a former roommate. Like many of The Arc’s employees he has some truly inspiring stories about the people he has worked with.
“[One of them has] never been able to actually stand in his entire life, and last year after 55 years of always having to be in a seat he got to stand for the first time in his entire life, and the smile on his face was just priceless,” McNeil said. “It was really nice because it was the first time I got to look him directly in the eyes standing up. I got to shake his hand, and it was like meeting him again for the first time.”
Holly Wallace’s journey to The Arc has been no less interesting. When she isn’t serving as MOVE Program coordinator she’s tending to her avocado farm. Before this she worked with the disabled in Michigan.
She spoke of how employees often develop a very close relationship with those they help. They will often take program participants out to see movies and do their marketing, all while the participants rely on them to be safe. Employees have to help participants in very personal settings, so a strong bond seems inevitable.
“We’re the ones that are changing their briefs and stuff, so it’s an intimate act right there,” Wallace said. “We’re feeding them, we’re changing them, we’re doing job training for them, so, year, they have a lot of trust in us.”
Schulz explained that The Arc hires most of its workers at a salary just above the minimum wage.
Wallace spoke of how hard it can be financially for the program’s employees.
“The people that are here love their job, but they also deserve to go to school and live their dreams,” she said. “My job is to help people live their dreams, but somebody should help us live our dreams.”
McNeil claims to be a bit more fortunate in this regard as he has no dependents and rents from a family friend. This allows him to get by, working for The Arc and going to school. Others are not so lucky and often have to work two or more jobs. He claims he has seen a high number of his fellow employees with this problem.
“It’s really hard on those people because you can tell they love their job and this is the only thing they want to do,” McNeil said, “but at the end of the day they have to have money for their families and to support everyone they care about.”
She claimed that this leads many to work at least 65 to 70 hours a week.
Schulz said one of the most telling things about The Arc.
“One of the things we learned from some training we took was a guy who said, ‘Just ask yourself, is it good enough for me; and if you can’t say yes, it isn’t good enough for the people that you support.’”
She also related a common saying amongst those at the office.
“If you haven’t cried today you haven’t had a day at The Arc,” she said.
For more information, or to get involved or donate to The Arc of Ventura County, go to www.arcvc.org or call 650-8611.