KALAMAZOO – People do not forget the day their child is diagnosed with autism, said Catherine Pinto, the mother of a 22-year-old son with autism.
“He was less than two-years-old,” she said. “Back then they didn’t give you any hope. Now I see so much more hope.”
Pinto wants to increase that sense of hope.
Emotions aside, the harsh reality is that the cost of raising a child born without health issues from birth to age 17 is estimated to be between $212,370 and $490,830 depending on a family’s income level. Conservative estimates on the cost of raising a child diagnosed with autism are about $625,000 from birth to age 18.
However, the costs associated with raising an autistic child don’t stop when that child becomes an adult. Depending on where they fall on the autism spectrum, which gauges the severity of this medical mystery, that adult may always require certain levels of supervised care and the costs associated with that don’t come cheap.
This is among the driving forces behind a push by a Kalamazoo-based group, which includes Pinto, to establish a nonprofit working farm for adults with autism.
Pinto and Cindy Semark,who has 39-year-old son with autism, are forming an organization designed to give adults diagnosed with Autism Spectrum Disorder the option to live and work in an agricultural community in Kalamazoo County.
“There are many people with autism who will need financial and living supports for the rest of their lives,” Pinto said. “Although we’re all shocked by the increase in the rate of autism, when you play that out 10 years from now there will be a tsunami, millions of adults with autism are going to be dropped into the system and out of the autism system.
“What we are trying to do is to get ahead of the wave and bring something to Kalamazoo that will address a desperate need.”
Autism is a developmental disorder that affects social, language and perceptual development, often with widely varying degrees of impairment across children. The prevalence rate for Autism in the United States is 1 in 88 children aged 8, a 78% increase in prevalence between 2002 and 2008, according to the Centers for Disease Control and Prevention. In the State of Michigan, nearly 16,000 students with an autism spectrum diagnosis were enrolled in public schools as of 2011.
Rules relating to special education services in Michigan require public schools to provide services to students with ASD up to the age of 26. Pinto said a new phase of life begins for them after the age of 26 when they are no longer eligible for programs and services from the public schools.
“Families are forced to try to piece together appropriate work/activity options for their young adults from a maze of inappropriate options,” Pinto said.
“Based on CDC prevalence rates and the approximate number of births/year, about 114,000, in the state of Michigan, we can predict that an additional 12,000 children per year will be born in the State of Michigan with an autism spectrum diagnosis,” Semark said. “ The lifetime cost of caring for a child with autism is estimated to be $3.2 million in 2003 dollars with most of the costs being associated with lost productivity and adult care.”
The founders of AACORN Farm — Autism Agricultural Community Option for Residential Needs – are hoping to be granted a tax-exempt, nonprofit status soon so they may begin raising the funds needed to build and operate a permanent-housing farm community for adults with autism in Kalamazoo County.
Dr. Liz Farner, a Kalamazoo-based pediatrician, said she sees the effectiveness of farm therapy with her autistic patients. She has been using this type of therapy since 2000.
Farner has been working with Pinto’s son, Tom, 22 and Semark’s son, Jeremiah, at Tiller’s International since 2012. Tillers provides the space free of charge.
“For Tom working with cows and pigs and goats and horses and chickens is so important to him and lets him take care of something that needs his care,” Pinto said. “No matter who you are or what your challenges are, there’s nothing like a sense of being needed.”
Pinto and Semark began laying the groundwork for their farm two years ago.
The holdup in the awarding of nonprofit status is due to an aggressive campaign the Internal Revenue Service began in the last few years to make sure nonprofits have the proper paperwork and documentation. Those that don’t could lose their nonprofit status.
In addition, a number of new nonprofits have come on line in response to the devastation caused by Hurricane Sandy.
Pinto said it will cost about $3 million to make AACORN Farm a reality. She said a minimum of 40 acres is required, but that between 60 and 100 acres is more realistic to house 600-square-foot units which will have a bedroom, bathroom and living area for each resident with a common area where meals and activities will be shared.
“Tom deserves a life that I’m not in charge of,” Pinto said of her son. “The problem is the life he wants doesn’t currently exist. That’s what I’m trying to give him.”
The living quarters at AACORN Farm will be designed to accommodate four residents who would live on the farm and attend day programming there or work elsewhere in the Kalamazoo area.
While urban areas provide the greatest opportunities for employment, these settings can also bombard the individual with autism with too much noise and activity. This frequently leads to sensory overload, increased anxiety, and agitation, according to AACORN’s business plan.
“One of the things about working in an agricultural setting is that it’s an atmosphere where there’s less noise and stimulation and it’s peaceful,” Pinto said.
The farm would employ agricultural professionals who would manage farm operations and work with the residents.
Money would be raised through the sale of the farm’s crops in addition to fundraising events and craft shows.
Similar farm-based programming for autistic adults is already happening in places such as Bittersweet Farms in Whitehouse, Ohio and Benjamin’s Hope in Muskegon. Pinto said they are using Bittersweet Farms as the blueprint for AACORN.
“Other people have options in their lives and people with disabilities should have them too,” Pinto said. “We want to create as many options as possible in their community. People with disabilities need to be supported in the decisions they make in their own lives.”