Autism and Employment: A Candid Discussion with Gregg, Lori and Gina Ireland of Extraordinary Ventures

“Our hope is that employers across the country realize that disability is part of the human experience.”

I had the pleasure of interviewing Gregg, Lori, and Gina Ireland.

Gregg Ireland: Gregg and Lori Ireland, whose son, Vinnie, has autism spectrum disorder, faced a problem that is becoming increasingly common among parents of younger adults with ASD. How to put a plan in place for the long-term happiness and success of their adult child who is challenged but nevertheless capable of holding a job and doing meaningful work. For the past 7 years, Gregg has played a central role in the growth and development of Extraordinary Ventures, currently serving as an officer on the Board of Directors. Gregg is also Chair of the Autism Science Foundation, New York.

Lori Ireland: Lori is Vice-Chair of the Autism Society of America. She is past president of the local unit of the Autism society of North Carolina and Arc of Orange County, NC. She is a founding member of the Admissions Committee at the Murdoch Developmental Center (ICF/IID). She holds an MBA from UC-Berkeley Haas School of Business.

Gina Ireland: Gina Ireland serves as the Ireland Family Foundation Liasion to Extraordinary Ventures. She is also Extraordinary People’s Distribution Partner through her firm, Cardinal Blue Consulting, LLC. Gina founded Cardinal Blue Consulting (CBC) to offer media-based strategy consulting, startup fundraising, TV and film financing, production and distribution services, marketing and branding strategy, and due diligence. Her experience spans major studios, media for technology companies, entertainment startups, and investment banking.

Thank you so much for doing this with us! What is your “backstory”?

-Gina and Gregg have long been active supporters of Extraordinary Ventures.

Begun in 2007 with seed money from local parents of children with autism who were reaching adulthood, EV was founded to meet a significant challenge facing communities across the country: how to train and employ the increasing number of young adults who are “aging out” of public school and are no longer able to access existing services.

Today, EV employs a workforce of more than 50 of these young adults, demonstrating what can happen when families reject the notion that their children are not capable of keeping a job or doing meaningful work. Further, EV is unique in that it relies on energetic, entrepreneurial recent college graduates to run the organization, assess community needs that can be filled, and then start and manage these businesses — or “ventures” — designed to embody the skills and interests of the individual employees. To date, a full-time staff of five social entrepreneurs manages a portfolio of small businesses, each designed to be self- sustaining.

Can you tell me about the most interesting projects you are working on now?

After all our lessons learned starting Extraordinary Ventures, we wanted to share our story through a documentary. We are currently screening the film across the US. Please reach out to us if you’d like to learn about a screening in your community.

Extraordinary People is a film about six young adults on the autism spectrum — each with his or her own individual challenges, skills and interests — who have found meaning and a deep sense of pride from their work at a business called Extraordinary Ventures. The film redefines expectations for employers and society alike, and shows the essential role a job plays for not just these six individuals, but for all adults.

The background is the surging population of adults with autism that’s a growing national crisis. Suddenly, or so it seems, America is confronted with an “epidemic” of autism. It is a lot of people reaching adulthood, looking for a life with meaning, purpose and dignity, including a solid and respected job, the same as everyone else.

However, the challenges with autism are very steep. The people typically lack
communication and social skills. Flexibility is not their strong suit, either. As a result, the job market for these people is thin or non-existent. The unemployment rate for autism is highest of all developmental disabilities, over 85%, and it represents a tremendous stain on society, the economy, government and taxpayers, and of course the families and individuals.

What can be done? The film focuses on efforts that have worked successfully, namely, creating employment that focuses on taking advantage of strengths and talents of individuals. The story is about new and innovative approaches
to helping this population.

Can you tell me a story about a person that you helped?

Ewan, a super friendly, happy and talented young man, is responsible for the success of EV Gifts, especially the company’s art and jewelry line. His passion for cooking led to the creation of a premium scented candle business. Ewan can be found in all parts of EV, including EV Pets.

This is obviously not easy work. What drives you?

Our brother and son, Vinnie Ireland, is an inspiration.

Vinnie has worked at EV Laundry for more than six years, doing pick-up and deliveries with the aid of his job coach. He also has his own yard maintenance business he calls “Weed Whacking Weasel.” He likes schedules and knowing what is expected of him. He enjoys outdoor activities and especially loves the beach and tubing.

Are there three things the community, society, or politicians can do to help you address the root of the problem you are trying to solve?

Below is a testimony Lori read before Congress last May. It contains this information.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful for who helped get you to where you are?

Van Hatchell and Paige Morrow have each had tenures as Executive Directors at EV. Their dedication, hard work and vision keep the organization going.

What are your “5 things I wish someone told me when I first started,” and why?

1. You won’t get everything right the first time. Mistakes are part of the
   process. Don’t dwell or worry. Just fix them and keep moving forward.
2. Team up with people who are worker bees like you; people who want to get things done.
3. Operate real business. For example, in our college town we saw a demand for laundry services. Without demand, there are no sales and EV runs based on the ability to create real revenue.
4. Operate a portfolio of businesses. This allows jobs to be tailored to individual skills. See below for descriptions of our six businesses.
5. Pay everyone at least a minimum wage with the same standards and expectations as any other business. Employees are so proud to take home their paychecks at the end of the week.
6. Serve the full range of adults on the spectrum. Disability is part of the human experience.
7. Experiment with business decisions until you get it right. You don’t have to have all the answers at the outset.

If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be?

Our hope is that employers across the country realize that disability is part of
the human experience. We hope that more organizations are better prepared for and willing to employ adults with autism.

Is there a person in the world whom you would love to have a private breakfast or lunch with, and why?

We would love to speak to Melinda Gates. The Gates Foundation has taken on so many worthy causes and we would love for employment models for adults with autism to be their next one. Also, Gina is a fellow Duke alum!

What is the best way our readers can follow you on social media?

Please check out our film’s social media pages and website or buy EV Gifts:

https://www.extraordinarypeoplefilm.com/

https://www.facebook.com/extraordinarypeoplefilm/

Instagram: @extraordinarypeoplefilmd.EV

Gifts: https://gifts.evnc.org/

This was very inspiring. Thank you so much for joining us!

For more information, read Lori’s testimony:

My name is Lori Ireland. As noted, I am the elected Vice Chair of the
Autism Society of America, testifying in my role as a founder of Extraordinary
Ventures.

I want to thank Chairman Chabot, ranking member Nydia Velazquez and
esteemed members of the Committee for allowing me this valuable opportunity to address the employment needs of adults who have an autism diagnosis.

Last week, the CDC announced that the incidence of individuals diagnosed with autism is now 1 out of every 59 eight year olds, up from 1 in 68 when the CDC last reported the incidence number. While these numbers certainly require attention, there are additional statistics that need to be highlighted. An estimated 70 percent of adults with autism are either unemployed or underemployed, despite their ability, desire, and willingness to work in the community, and as many live on incomes below the poverty level.

Each year, 50,000 additional individuals with autism are entering adulthood.
Simply put, we are not providing or creating the job possibilities required to
meet these numbers and as important, we are not providing the opportunity for so many to have an adulthood that provides each with the highest quality of life possible.

Extraordinary Ventures, formed in 2007, is a sustainable business
model and one unique solution addressing this employment crisis. With an
operating budget of $1 million comprised of 80% business revenues and 20%
private donations, and more than 50 tax-paying employees all of whom have
disabilities, we are also a real part of the local marketplace and economy.

We have accomplished this through old fashioned American business
practices and four core philosophies:

1. We operate as a real business. Nothing works if we don’t make quality products and services that the marketplace will buy, and in turn support us. We serve an important mission in our community and customers support that, but everything we do starts and ends with delivering competitive products and services. Without this, there would be no sales and then no jobs. That is the main distinction for EV over almost every other autism enterprise that we run into.
2. We operate a portfolio of businesses. This model allows us to provide a variety of job options to the people we hire and the opportunity to find the right fit for each person. While a business will typically hire to fill a specific, set job, we are able to change or re-arrange operations and workplaces so that the work in front of our employees is a good match for their capabilities and interests. So we find the job to meet the person, not the other way around.

We currently operate 6 businesses:

A pick-up and delivery laundry operation serving about 150 UNC college students, residential families and businesses in the community. We are priced competitively in the market and have a waitlist for new signups so the operation is primed for expansion if our employees can be provided consistency in support staff and a higher income cap.

A bulk mailing operation where we send out 60,000 pieces of mail
per month.

EV Gifts where our employees create a premium line of handmade
candles soaps, lip balms and other products that are sold online and in retail
stores across the state.

EV Pets dog walking business serving the local community.

A bus detailing service which operates on of a yearly contract with
the town of Chapel Hill servicing a fleet of public transit vehicles.

An event center where we rent out the surplus space in our building
for parties, conferences, and meetings — this provides good cash flow that
helps pay the rent and support the other businesses.

3. Everyone is paid at least minimum wage. Our employees are paid fairly and held to the same standards and expectations as any other business. As people improve in their jobs, they grow into bigger roles and are compensated more. Currently our employees earn anywhere from minimum wage to $15 an hour.

4. We serve the full range of adults on the autism spectrum. We are able to offer a wide variety of tasks within our businesses that in turn, best suit a wide
variety of people. We employ people that live and work independently to those that are non-verbal, prone to severe behaviors and need 24/7 support — These are the people that need your help. In our experience, the difficulty is not in successfully employing someone with a disability, it’s keeping consistent support staff available to them so they can grow in their jobs and expand their role and hours while facing a low income cap.

We are witness to the dramatic positive impact have a job has on our employees. We see the significant decrease in behaviors, the increase in job skills, dexterity, communication, life skills, and confidence. There is no question that employment is beneficial and a worthy cause to fight for. What we are trying to do is put the largest number of people in jobs that will still be around fifty years from now. It begins with setting these individuals up with opportunities allowing for growth and independence and continues with sustainable business practices.

There are also incredible benefits to employers and small businesses that come with the hiring of adults with autism. For example, employee retention. While we have a number of employees who gain the necessary skills to leave and pursue full-time employment outside of Extraordinary Ventures, which we applaud, we also have employees hitting their 8, 9 and 10 year anniversaries almost every week. With millennials switching jobs about every two years, this should be a huge selling point to small businesses, especially when the ideal positions for adults with autism tend to be the ones with simpler, more repetitive tasks that typically have high turnover.

As I noted, Extraordinary Ventures does not seek or rely upon government funds. We pay livable wages and are now generating 80% of our costs through product and service revenue and the remaining 20% from donations. While we are very proud of our work, I would be doing a disservice to our employees and their families if I didn’t ask you to address two critical policy needs that we, and many others, such as the Autism Society of America, our strong partner, believe can expand and help our efforts. We know that in partnership with the Autism Society, we can expand our efforts but we need not your help financially, but in terms of public policy changes.

Let me give you an example. One of our workers came to us and was on SSI for years. His SSI payment as around $700 and that was all he had as income. When the cost of a one bedroom apartment in Chapel Hill is around $600, he couldn’t afford to live as independently as possible since he had only $100 for utilities, transportation and food each month. He received SSI when
he was unable to work and after other agencies helped him, he was ready to work. He came to us and excelled at work. He was so proud of his first paycheck, but because of his disability, he could only work part time and his take home pay was around $300 after taxes were subtracted. He then realized that due to SSI rules, his $300 would result in losses of his SSI income. While certainly we want to help people off of government support whenever possible, the current approach isn’t helping us do that. Our worker was only able to have a total of around $850 which still would not allow him to move to a higher level of independence. And when you consider that apartment rentals often require security deposits, limitations on how much he could save under SSI rules limited such savings to less than $2000.

On behalf of this individual and all of those facing the same problem, I would like to make some specific policy recommendations to address some of the challenges for individuals with autism and other disabilities who want to work but cannot risk the loss of health care and income supports:

• Increase the Substantial Gainful Activity (SGA) level at least to the level used for people who are blind.
• Substantially increase the resource limit for SSI and annually index for inflation.
• Enact simplification of work incentives, including allowing on-going presumptive re-entitlement to Title II disability benefits and on-going eligibility for Medicare for those who lose benefits due to work but continue to be disabled.
• Provide cash assistance outside of Social Security and SSI to assist working individuals with disabilities in meeting their disability-related costs, regardless of their income or assets.
• Enact technical and substantive changes to the Ticket to Work and Work Incentives Improvement Act to ensure the law works as intended.
• Protect the Affordable Care Act and provide incentives to states to expand Medicaid authorized by the law.
• Protect the Medicaid program and provide incentives to states to implement the option to buy into Medicaid for people with disabilities who work.
• Reject work requirement for eligibility for Medicaid. This will not help people find employment and will jeopardize their health and well-being. Medicaid provides health care services and long-term services and supports that maintain the health, function, independence, and
  well-being of 10 million enrollees living with disabilities and, often, their families. For many people with disabilities, their lives literally depend on being able to access needed healthcare. Medicaid helps people stay healthy so that they go to work.

We also encourage you all to examine ways those of us in the non-profit world who hire individuals with a disability can benefit in a way similar to tax benefits paid to for-profits that hire groups that are chronically unemployed. We don’t want funding but want to be able to encourage more entities to hire the most in need and challenged, who often have higher training and support costs.

Extraordinary Ventures hires more than 50 individuals. Imagine just one similar agency in every state and the District of Columbia hiring a total of 2550 people. We are a true small business. Our workers pay taxes and we provide needed community services and products. We provide opportunity to both individuals who have college degrees and those who require 24 hour assistance.

You all can help us change and create the policies needed to accomplish this. I ask that you bring on experts such as the Autism Society of America and others who can find reasonable, cost effective ways to help make employment an opportunity that enables a person with a disability to be able to live the American Dream to the fullest extent that they are able.

I thank you for this opportunity to tell you about our work and our wish to expand employment options for every adult with autism.