At 33 years on the job, Anna-Lynn Brink, director of community services at Mary Cariola Children’s Center, is now four years into a new sort of initiative tackling some of the toughest and most complex cases at the agency.
The therapeutic respite program was started in 2015 as a means of addressing youths, ranging in age from 9 to early 20s, who have severe behavioral issues. Respite programs themselves are often traditionally more of a service to the parents or guardians of those youth, offering a chance to take them off of their hands for a period of time and offer a much needed break. While those services can be invaluable to families, for the youth themselves, the traditional method does not offer much in way of long-term solutions.
“Traditional respite is looked at as giving the family a break from the 24/7 care that comes along with having a child with special needs,” Brink said. “What we’re seeing is that children that have behavior challenges aren’t successful just going into a new setting, being dropped off and kind of ‘have a good time, we’ll pick you up tomorrow.'”
The therapeutic respite program is different in that it’s fundamentally based around making a lasting difference rather than giving short-term relief. In the program, the youth spends one week in respite per month, with an additional three weeks spent with Mary Cariola direct support providers at home, working with the family at home and out in the community, over about 20 hours total.
Each child is unique with unique needs, and there is no one-size-fits-all solution. But for Brink, if there is one common thread in therapeutic approaches, it’s consistency.
“In that month, we have three different phases of everyone doing the same plan,” Brink said. “You have the family’s approach to behavior the same as the community (habilitation) staff’s approach to behavior and the same as the respite staff’s approach. Most of the community hab staff and respite staff are the same people, so there’s a lot of consistency there.”
Mary Cariola is the first New York agency to offer Habilitative Respite, based at the center’s Bailey Road facility, consisting of two beds, and a third new bed at the State Road facility in Webster. Brink said there are about 12 individuals starting to utilize the bed at State Road and another eight at the Bailey Road beds. The first bed at Bailey Road is used for the weeklong stays, typically done once a month for a year, with individuals eventually “graduating” to the second bed, which is used more for weekends, shorter stays or respite stays by need.
If it seems like a slim amount of resources, you’re right.
“We always have enough people to go into those beds—we’re never at a loss for people to fill those slots,” Brink said. “We are sometimes at a loss for people to support them.”
The direct support professionals, the people working hands-on with these youth, face an emotionally and sometimes physically taxing job with low pay. According to the Bureau of Labor Statistics, home health aides’ mean wage was $13.99 per hour in the Rochester metropolitan area in 2019, or $29,110 annually. Psychiatric aides earned a bit more, at a mean salary of $43,480. However, in 2018, there were only 130 psychiatric aides in the metropolitan area, compared to 5,350 home health aides.
In total, a healthcare support occupation in Rochester has a mean annual salary of $31,730.
“Our competition are food service workers—their minimum wage is rising at a higher level than the regular minimum wage,” Brink said. “It’s a lot less taxing to flip a burger or serve some fries than it is to support a young man who is, let’s say, 16 years old, but he’s 6’2″ and weighs over 200 pounds who is going to hit at you or spit at you.”
A $400,000 state grant originally supported the Bailey Road program. In all, Mary Cariola is largely supported by state and county funding and reimbursement, making up two-thirds, or $22.2 million, of the agency’s funding in their 2017-18 annual report. Local donations, meanwhile, accounted for 4.9 percent, or $1.6 million.
The community can get involved, Brink said, by reaching out to local legislators and urging for better wages for direct support staff, the people who often put their well-being on the line to one day make a difference in a young person’s life. She points to one story of a young man who took a full 18 months to cross the threshold of a movie theater, and another six months before he sat and watched a movie. She described the payoff of watching him smile and eat his popcorn, and the credit that staff has earned by making that simple moment possible.
“They should feel so proud of themselves,” Brink said. “It may seem like just a movie, but no, it’s all of those transitions, into a vehicle, out of the vehicle to go and step into a door into a dark room. All of those things took an amazing amount of time… to see that at the end, it didn’t matter how long it took.”