- Associated Press - Sunday, March 6, 2016

WORCESTER, Mass. (AP) - Sue Loring, as director of Autism Resource Central in West Boylston, knows how exhausting it can be to care for an autistic child. And Lauri Tenney, senior director of benefits at Hopkinton-based EMC Corp., knows how to create an environment that works for employees dealing with the disability.

As ARC’s director, Ms. Loring is an advocate for workplace initiatives such as EMC’s to meet employees’ need for more help, as well as businesses’ need for best practices.

“Companies should be aware of the impact of having an autism family member on their employees,” Ms. Loring said.

Ms. Tenney said EMC was one of the first companies in the state - ahead of the state mandate in 2010 for companies of a certain size and qualifications - to provide health care benefits to employees and their family members with autism. Employees requested the benefits, she said, and EMC initiated work with its health care provider, Optum through UnitedHealth, in creating the infrastructure for the autism-related insurance coverage.

“This benefit has been key to attracting and retaining quality talent,” as well as “key to acquiring talent from competitors,” Ms. Tenney said. The developer of information technology services and software, EMC has a highly educated, engineering-focused workforce, she said. “As important as it is to do the right thing, it’s also a business issue.”

Asked what kind of metric EMC uses to quantify such seemingly intangible benefits, Ms. Tenney replied in an email: “While not measurable per se, is that this is a ‘business issue’ because supporting our workforce in this space enhances productivity; providing peace of mind and reducing stress for parents of autistic children, making it easier for them to attend to EMC’s business objectives. In the aggregate, this is measured in absenteeism, time away from work, leaves, presenteeism, etc.” (Presenteeism is defined by Harvard Business Review as “being on the job, but because of illness or other medical conditions, not fully functioning.”)

About 3,000 Central Massachusetts families grappling with the developmental disability are registered with the Autism Resource Center, Ms. Loring said. For those who work outside the home, handling the “needs of a child with autism that can be all-consuming.”

Autism Spectrum Disorders affect how a person uses language, grasps abstract concepts and establishes relationships.

A 2014 National Health Interview Survey of 12,000 parents conducted by the National Center for Health Statistics suggests that 1 in 45 children ages 3 to 17 have ASD, compared to the official government estimate of 1 in 68 children by the Centers for Disease Control and Prevention in Atlanta. Results are expected this year from a collaborative study by Autism Speaks and the CDC, testing the same active screening methods in a U.S. community, according to AutismSpeaks.org.

“Unable to learn from the natural environment as most children do, the child with autism generally shows little interest in the world or people around him. Some children with autism acquire advanced skills, but most exhibit a wide range of behavioral problems,” according to HMEA.org, the website of the Horace Mann Educational Association based in Franklin. Funded by the state, HMEA provides support, affirmation and services to people with all developmental disabilities. Its Autism Resource Central, which also receives financial support for its programs and activities through donations and fundraisers, specifically provides lifelong support to people with Autism Spectrum Disorders.

ASD can lead to an unproductive and frustrating adulthood with an underemployment or unemployment rate of 85 to 90 percent. Yet many autistic people share common strengths sought by employers - “intense attention to detail, commitment to quality and consistency, creative and out-of-the-box thinking, excelling on repetitive tasks, lower turnover rates, honesty and loyalty,” according to a report by AutismSpeaks.org on a hiring initiative by Microsoft.

Another new employment initiative by Autism Speaks, in collaboration with DirectEmployers Association, is TheSpectrumCareers.com, an online portal for autistic job seekers, employers and service providers. DirectEmployers is a consortium of more than 800 business members focused on recruitment marketing and federal contract compliance.

Technical, detailed work and jobs requiring repetition and memory are among the “good fits” for people with autism, according to author Patty Pacelli (autismfriendlyworkplace.com) in an April 24, 2014, post at HR.BLR.com (Business & Legal Resources in Brentwood, Tennessee.)

A registered nurse, Ms. Loring and her husband have three children. Their son was diagnosed with autism 28 years ago, when she was working at a local hospital. She worried every time the phone rang at work that she would have to dash off to his school, which could raise questions, from a business perspective, about her on-the-job performance. At home, any attempt to structure time with another child would be interrupted by the latest crisis.

A child with autism, she said, “presents so many immediate needs. They have no sense of danger; they disappear all the time. It leads to hypervigilance, which impairs the ability to give other kids your attention.”

“Can you imagine the feeling of working for a whole day and sleeping for only three or four hours at night? That’s crazy,” Ms. Loring said.

A research study published in the April 2012 edition of Pediatrics, the official journal of the American Academy of Pediatrics, was the first to look at the costs to families of children with ASD, both in terms of parental labor market outcomes and indirect costs of policy affecting support of families and care of the children. It concluded: “Families of children with ASD face significant economic burden” from health care costs, lower incomes, and fragmented services and resources.

According to the CDC, the total of direct and indirect costs per year for children with ASD in the United States was an estimated $11.5 billion to $60.9 billion in 2011 U.S. dollars.

At the opposite end of the economic spectrum, though, is recognition that people with disabilities and the community of family, friends and associates surrounding them constitutes a $1 trillion consumer market, including $220 billion in discretionary income, according to the U.S. Census Bureau information cited by Autism Speaks’ “Employers Guide to Hiring.”

The guide suggests practical on-the-job accommodations such as written instructions, e-reminders of schedules on a tablet or smartphone, visual cues and state-funded job coaches to reinforce training. The advocacy group also provides an “Employment Tool Kit” for autistic job seekers, with practical advice on areas needed by anyone in search of work, including resum├ęs and how to find the right job.

The guides and tool kits are among the sort of information made available on flash drives to human resource professionals at HMEA’s Autism Resource Central summit last September in Worcester, Ms. Loring said. She is continuing to engage HR departments at area businesses, to pull together best practices for employers, to help businesses develop Employee Assistance Plans that reach beyond the health insurance basics of diagnosis of symptoms, and to encourage employers to think along the lines of EMC.

The Hopkinton company’s benefits include a behavioral health care plan, which helps pay for the Applied Behavior Analysis therapy that is used predominantly to treat autism, Ms. Tenney said.

“The earlier the treatment, the better the outcomes,” she said, for children who are seen regularly by case workers who can help both child and family with managing, developing and improving social behaviors and communication skills. “They seem to fare better long term,” she said.

ABA treatment consistently represents more than 60 percent of total behavior health claims annually at EMC, according to Ms. Tenney. In the last three years, EMC’s company-paid portion of all autism-related benefits was $4.02 million, of which $2.52 million was for ABA therapies, she said. The number of claimants at EMC has increased from 64 in 2013 to 98 in 2015. (Asked about the potential impact on this program by Dell’s purchase of EMC, Katryn McGaughey, a company spokeswoman, said EMC doesn’t comment on any aspect of the pending acquisition.)

EMC is also connected to a support group through the MetroWest Autism Alliance (autismalliance.org), Ms. Tenney said, and it conducts global awareness campaigns through “Light It Up Blue.” The company’s MyEdGPS provides online roadmapping for employees with special-needs children to keep track of services, schools and Individual Education Plans. And EMC provides on-site counselors to help employees with ASD in private during the day, and clinicians are on site as well.

“We not only want to help with those employees,” she said, “but also aim at raising autism awareness around the world.”

For Ms. Loring, finding a job with HMEA in 1998 gave her the flexibility she needed to “beat the bus” when her son got home from school. When the phone rang and she had to go to his side, she was told, ” ‘Go ahead. Take care of it.’ That was OK with them,” she said.

“I work for a great company,” Ms. Loring said. “I do stuff I love.”

___

Information from: Telegram & Gazette (Worcester, Mass.), https://www.telegram.com

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