Autism Alliance of Michigan ramps up focus on living options, jobs for adults
Her parents, Peggy and David Meador, vice chairman and chief administrative officer at DTE Energy Co., didn’t accept that. They fought and got their daughter into an Oakland Schools career program focused on two things she loves: plants and animals.
It was a good fit, considering Belle has a horse, snakes, a skink, a tortoise, a rabbit, koi, turtles and her constant companion, a golden retriever service dog named Magic, her dad said.
There was no process in place for finding work opportunities after high school for his son and others on the spectrum, he said. D’Arcy was able to secure volunteer work for his son with a local health care organization.
“But that’s not fair; most people can’t get on the phone and get their child (work,)” said D’Arcy, now a partner at Troy-based Quantum Group LLC.
“The system should develop people and connect people and do this for everybody. It shouldn’t just be people who have influence … and money.”
After spending much of its first 10 years focused largely on improving diagnosis, coverage and other supports for children on the spectrum, the Autism Alliance is taking aim at change that will help adults living with developmental disabilities get into jobs and supported or independent living.
It’s ramping up its efforts to expand workforce development for all people with disabilities through advocacy with employers and support for the accommodations needed to create those jobs.
It’s also pushing for equal access to vocational training for people with disabilities who have not earned a high school diploma or GED. Late last month, the alliance met with Henry Ford College in Dearborn to broker a pilot program that will enable those affected by autism to earn a vocational certificate, even if they don’t hold a high school diploma.
“This is really a civil rights issue, whether it’s health care, employment (or) education,” D’Arcy said.
A decade ago, families faced waits of up to two years to meet with medical experts in autism disorders to even get a diagnosis. Autism therapies in Michigan weren’t covered by insurance, and at a cost of more than $50,000, they were out of reach of most families.
Given that, the state had just 30 therapists who practiced the treatment regimen known as applied behavior analysis, often called ABA. Families would track Meador, D’Arcy and others down to ask where to turn for help at every juncture, given the lack of information in navigating the complex landscape of care for autism spectrum disorders.
The alliance advocated for new laws ensuring insurance coverage for autism therapies, convinced employers that were self-insured to cover treatments and launched a navigation program to connect those with autism to free lifelong support and resources. It’s also trained first responders to recognize people who are on the spectrum and signs of abuse for those who can’t speak.
Today, the average age of diagnosis has dropped to 4 years old from 7, and more than 15,000 children are receiving therapies covered by insurance and will help them assimilate in schools and jobs, according to the alliance.
“These are going to be kids who will need fewer special education services,” said Colleen Allen, president and CEO of the Autism Alliance. “They’ll be more independent, and they’ll hold jobs.”
Eight Michigan universities are now doing research and training in autism, up from two in 2009. And there are 1,500-1,600 ABA therapists in the state, Allen said.
The alliance is continuing to support children through efforts such as advocacy for changes in special education. But it’s now shifting a big part of its focus to the living and work options for adults on the spectrum.
“It was a great surprise to us, but children grow up,” D’Arcy joked.
So do caregivers.
That’s got parents like D’Arcy and Meador and others on the alliance board thinking about what the future holds for their adult children.
There are 1.4 million adults with developmental disabilities, including autism, in Michigan, Allen said, pointing to state data from 2017. That population is expected to increase by more than 200,000 people by 2030.
Of those, 38,000, or just 2.7 percent, are receiving vocational rehabilitation support services through Michigan Rehabilitation Services, which works with them and employers to place them in jobs. It’s not clear exactly how many people with disabilities are employed in Michigan, Allen said.
But for some comparison, nationally, 16.8 percent of adults with disabilities are employed, according to data from the U.S. Bureau of Labor Statistics.
As it puts more emphasis behind services for adults on the spectrum, the alliance is looking to ensure they have options for supported or independent living in their communities.
“There are no housing options, period, unless you just buy a house and pay for caregivers to come in,” Meador said.
The alliance is in Lansing, advocating for reimbursement rates of $2 above minimum wage for caregivers, Allen said, to help improve the quality of care, increase retention and help address caregiver shortages.
“The ironic thing about this is that from a public policy point of view, it is almost certainly less expensive to the taxpayer to do all this stuff right than to do it wrong and have so many people totally dependent on Medicaid and Social Security,” D’Arcy said.
That said, job arrangements for adults with disabilities must be considered case by case, depending on abilities and the pay rate a person can earn, given that money earned impacts disability benefits, he said.
But for anyone with disabilities, “the work is more important than the money,” D’Arcy said.
On the job front, a growing number of companies are showing interest in hiring highly functioning adults affected by autism and other disabilities.
The challenge now is getting more companies to give all adults with disabilities a chance, Meador said. It’s also ensuring everyone, regardless of their abilities, has access to vocational programs that put them on a path to a job.
“Steve and I both see that the part-time jobs that we have for our adult children (on the spectrum), those are their best days,” he said. “Just like anyone, you have something to look forward to with a job), you get out of the house (and) you’re with other people.
“Sitting at home every day all alone for 70 years is a prison sentence.”
Last summer, the alliance used a $50,000 grant from United Way for Southeastern Michigan to help six entrepreneurs who are on the spectrum create financial and business plans for products they’d created and market and sell them at the Tuesday markets at Eastern Market. It’s seeking grant funding to continue those efforts, Allen said.
It’s also seeking to open doors for those interested in or better suited for more traditional job paths.
“What we started talking about is, let’s go see who does this the best in the country like we do with everything else. And let’s work with willing partners like Henry Ford to make them the best at doing this in the country,” Meador said.
Community colleges like Henry Ford could help recruit students with disabilities and train them and be a source of job candidates for businesses, he said.
Henry Ford is interested in expanding opportunities, President Russell Kavalhuna said in an emailed statement. “Everyone benefits when we open our doors to students of all abilities and talents.”
The college is in the early stages of determining how it can best enhance its support for students with autism spectrum disorder and is considering accreditation and program requirements as it decides how it will do that, Kavalhuna said.
“We are committed to providing access to high-quality education and services, and to ensuring success for all students. Those factors will guide any decisions we make.”
But those efforts won’t mean anything if employers aren’t open to hiring people with disabilities.
The alliance is expanding its outreach to employers, starting with those represented on the Detroit Workforce Development Board, which Meador co-chairs with Strategic Staffing Solutions President and CEO Cindy Pasky.
“We have a full spectrum, and every business has a full range of jobs,” Meador said, from the engineer to computer programmer to food services.
Other employees say it changes their lives to work with people who have disabilities, he said. And more diverse workplaces report higher productivity and bring tax breaks to employers.
“At S3, we know every person brings value and talent to the table and Belle is a shining example of that,” Thomas Halling, communications specialist at Strategic Staffing, said in an email.
“Belle has a great memory where she can recall the smallest details several months after we initially discussed them. She has been a tremendous help to us this past year, and has allowed our team to be that much more agile because of her efforts.”
The Autism Alliance is working to bring to the region the Home Depot program called Ken’s Krew through which the retailer employs eight adults with disabilities per store. That could add up to 550 jobs for the region, Meador said.
To support those efforts and others, the alliance is stepping up fundraising. About a third of its $4 million budget comes from the state and the rest from donations and grants. It has set a goal to raise $1 million at its annual gala on April 13 at Motor City Casino Hotel, Meador said.
The autism insurance coverage the alliance secured for Michigan families during its first decade was a big win, he said.
With the number of therapies now available and increased access to them, the next generation of people living on the spectrum will have much different lives, he said.
“If we can get the education and workforce systems to change over time, it will drive dramatic change.”
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