Greenville nonprofit that helps people with autism expanding with state aid

COLUMBIA — A statewide nonprofit focused on therapy and services for South Carolinians with autism plans to double the number of people it serves with help from millions of state dollars. 

With $3.7 million earmarked in the state budget, Project HOPE plans to renovate the five buildings it owns. That frees up its usual budget to expand its services and whittle down its waitlist. Its goal is to double from 300 clients to 600 in the next three years. 

The biggest barrier to expanding is a shortage of board-certified therapists to keep up with an increasing demand, said the foundation’s CEO.

Expanding services

Susan Sachs started Project HOPE with a friend in 1997 after her son, Michael, who was a toddler at the time, abruptly stopped talking. She and Lisa Hyman Lane struggled to find services to help their sons, both of whom were diagnosed with autism. 

“I was pretty desperate to find something that would help (Michael) really regain his voice,” Sachs said. 

In the 20 years since then, the nonprofit has grown from one campus to nine in the Greenville area. Project HOPE also runs a school, a screen-printing business and a day program, all designed for people with autism. 

Project HOPE primarily uses a form of therapy called applied behavior analysis, the most common therapy for autistic children, often referred to as ABA therapy. The one-on-one treatment involves rewarding people with autism for specific behaviors.

For example, a therapist using applied behavior analysis might use praise, extra playtime or other incentives for behaviors like making eye contact, which some people with autism find difficult. There are several levels of autism, and challenges vary.

Board-certified therapists assess each person in the program to determine which skills they need help developing and which need replacing. Some people who come to Project HOPE have no way of communicating or are incapable of getting dressed by themselves, so therapists work on developing those skills, Sachs said.

But the therapy does have its critics. Some advocates for people with autism have argued for years that it’s less about teaching skills and more about training people to act like they’re not autistic.

A group of nonprofits focused on advocacy — the Autistic Self Advocacy Network, International Council on Development and Learning and the WITH Foundation — put out a report in January 2022 questioning how effective the practice is in the long run and expressing concerns that it may damage peoples’ self-esteem by teaching them there’s something wrong with them that needs to be fixed.

“Part of that is a real emphasis on, ‘What can you make someone do through conditioning?’ as opposed to, ‘Why is someone doing what they’re doing?’” said Zoe Gross, director of advocacy for the Washington-based Autistic Self Advocacy Network.

But the therapy program, which also includes speech and occupational therapies, is Project HOPE’s most popular, with around 200 of its 300 clients involved in some sort of applied behavior analysis. Insurance usually covers the nonprofit’s therapy programs. Otherwise, paying out of pocket could cost up to $60,000 a year for treatments that take 30 hours a week, Sachs said.

Around 100 people are enrolled in Hope Academy, the nonprofit’s private school, which costs $11,500 in annual tuition, plus a $430 registration fee for new students. Twenty-five attend the adult day service.

Another 400 people or so are on a waitlist for services, Sachs said, as demand for the program outpaces its growth. 

The state money will go toward fixing and renovating the five buildings Project HOPE already owns. That might mean repairing plumbing problems, replacing a leaky roof or adding safety features, such as a fence at the campus in Landrum meant to ensure no one wanders off while playing outside, Sachs said.

With state money dedicated to maintenance, the foundation’s funds from donations can then be used to expand its programs. 

“A lot of kids are falling through the cracks,” said Sen. Josh Kimbrell, a Spartanburg Republican who sponsored the state budget earmark. “Project HOPE has done a good job of trying to marshal private resources to help.”

Analyst shortage

Eventually, Project HOPE could open more campuses. But for the moment, Sachs said, the biggest barrier in expansion is the number of board-certified behavior analysts.

Board-certified behavioral analysts oversee Project HOPE’s therapy program, including assessing kids, coming up with treatment plans and working with children and their families to replace skills.

Project HOPE has 30 board-certified analysts. That’s about one for every 10 people it serves. Keeping with that ratio, the nonprofit needs to hire another 30 analysts to meet its goal of doubling services, Sachs said. 

“To be able to grow the way we would like to grow, we’re going to need additional board-certified behavior analysts,” Sachs said.

The number of behavior analysts certified by the national board has grown exponentially in South Carolina over the past decade, from 88 in 2013 to 521 in 2022, according to Behavior Analyst Certification Board data. 

However, that number has not kept up with the number of people looking for services. The number of children ages 3 to 17 diagnosed with autism has also risen over the past decade, from about one in every 150 children in 2002 to one in every 36 in 2020, according to the Centers for Disease Control and Prevention. 

The reason for the increase is unclear, though part of it might be that testing is more available and people are more aware of what autism looks like, Sachs said. 

One way of meeting the growing demand, Sachs said, could be helping Project HOPE’s other staff members become certified, whether by helping them get the required degree or pass the certification test. 

She also hopes the nonprofit’s community outreach, centered around raising awareness about autism and promoting applied behavior analysis, encourages more people to become board-certified analysts.

“We talk to anyone we can about the importance of this field and the impact that that individual can make on children and families,” Sachs said. “So, hopefully we are encouraging others to go into that field, and maybe down the road, it won’t be such a challenge.”