Three Meals a Day, a Place to Call Home, Pulling Your Own Weight: Employment for Adults with Developmental Disabilities

Serendipity, fate, the roll of the dice, the big spinning wheel in the sky – who gets to be the child with developmental disabilities, and who does not?

The great leveler for those children with developmental and intellectual disabilities (I/DD) is they end up being born into families comprising of every ethnic, religious, cultural and economic origin and background.

Obviously, for parents, the challenge is living in a go-go-go society where physical prowess, drop-dead looks, and PhD smarts are valued over anything else.

“Having a child with a developmental disability is like having your brain rewired,” said Arc of Spokane’s Brian Holloway. “It forces this philosophical crisis in your life.”

All the things Holloway was taught – he has a master’s in composition and was ready to do the community college professor-and-writing-a-novel-on-the-side thing – had to be chucked. An inversion of traditional mores and values has to occur, as it did for Holloway who has four sons, one of whom is autistic. He worked a decade as an insurance claims adjuster, and after eight months of being unemployed, he heard of the Arc, saw the job posting, applied and it’s been bliss ever since.

Adam’s going to turn 16 this year, and his younger brother Derrick is Adam’s translator since Adam uses syllables and not words to communicate. He memorizes movie dialogue and the soundtracks from mostly Pixar films. “It’s a blast hearing him go through the entire film,” a proud dad says.

Like many siblings of brothers and sisters with developmental disabilities, Derrick has become a more patient, more accepting and more understanding member of our community, Brian emphasizes.

“He has been an influence in so many people’s lives,” Holloway says of his son Adam. Holloway sees the community enriched and better off with people with developmental disabilities integrated into our fabric than those benefits to the individual with I/DD. It’s another win-win in this integration model.

It Takes a Village to Raise a Business Community’s Mindset

The big question for the country is what do we do as a society with one out of five citizens having a disability when our culture is youth-oriented to the max and obsessed with doctors, lawyers and millionaires as the apotheosis of success? What’s the state of developmental disabilities in the Inland Northwest when considering employment opportunities?

The group as a demographic is looking at 85 to 90 percent unemployment. The big push in Washington state is integrated employment, which means paying the same wage for an adult with a developmental disability like cerebral palsy, fetal alcohol syndrome, Downs, autism, Asperger’s and any number of intellectual disabilities as paid out to someone who is “neuro typical” or typically developed.

It’s an “employment first” movement that is set into motion through federal regulations in the Americans with Disabilities Act (ADA) and other provisos around giving people who have been disenfranchised, warehoused away and left without any community a chance to be people.

“The standard practice for a family with a child with cerebral palsy or Down’s syndrome up to the 1970s was the doctor would say to you, ‘Go home and forget you even had a baby,’” said Brian Holloway. Institutions can look like warehouses, or enclaves where adults do menial and meaningless work for pennies on the dollar. Then, imagine the setting for the movie, Cuckoo’s Nest, where adults with mental disabilities were housed under incredibly horrific conditions (the now-closed down Oregon State mental institution in Fairview).

“As a person with a developmental disability self-reliance is so important to me! Knowing every time that I pay a bill or swipe my debit card that I worked for it! I remember when I made my first big purchase after being employed for a year,” said John Lemus, Community Relations Facilitator for Skils’Kin, an Inland Northwest (including Spokane, Great Falls, and Cheyenne) non profit who hires people with significant disabilities and offers job development and coaching, as well as community living services and payees services. “I had a huge smile on my face as I walked out of the Apple Store with my new laptop.”

Discovering the Value of All Members of a Community

I spoke with Patrick Striker, director of employment services for Skils’Kin – a Native American word meaning a place where people come to learn about themselves. We talked about the big contrasts between integrated employment and group- supported employment, the so-called enclave or sheltered workshop. That enclave work Skils’Kin manages is at Fairchild AFB, with about 12 folk working as custodians, groundskeepers, and food services workers. The enclave will be closed June 2018.

Before becoming an employment specialist, Striker’s worked the construction field for years and has a degree in theology-philosophy and an MBA. However, this job working with adults with developmental disabilities takes the cake: “I was looking for something more meaningful,” Striker told me.

That meaningfulness is centered square on convincing employers to see the added value of workers with disabilities. “This is not to be seen as a charity,” says the 36-year-old Striker, who grew up on a farm outside Seattle and ended up at Whitworth University and has stayed here ever since. He sees clients who have these incredible strengths and gifts that would be both natural fits and value added workers for a particular business. Many times, the worker with disabilities is in need of limited part-time work in order to stay eligible for Supplemental Security Income benefits and Medicaid. Few typically developed workers want part-time hours, plus neurotypical folk don’t stay on the job as long. The golden ticket for the prospective employer is that a worker with developmental disabilities comes into a position with a team of supports – from job developers to job coaches to case managers.

For the self-advocate like John Lemus, he doesn’t want business leaders to shut down when they are introduced to this “progressive and integrated” job pathway for a worker with a disability. In addition, he does not want that job match to be a failure. “We want to empower people with disabilities and the business community, by bringing them together to help facilitate the gap between the two groups,” Lemus said. “We enable the participants to have personalized support, with a personalized development plan, and continue to keep the conversation on building independence and self-esteem through work.”

It’s about sustainability for Holloway, Striker, Lemus and the dozens of employment specialists I get to work with in Oregon as a job developer for United Cerebral Palsy. That includes making the matches right and helping employers understand what reasonable accommodations and adjustments in the workplace mean.

“This is the right thing to do,” Holloway says. “Unfortunately, in this culture we value physical strength and competitiveness, the exact opposite most people with developmental disabilities posses.” He says each year the Arc takes self-advocates to Olympia to talk to politicians on both sides of the aisle to tell them how important it is to have a job. “One fellow last year impressed his state senator so much that the senator told him the guy he’d be a job reference for him.”

Hire Ability Day – A Diverse Workforce Includes People with Developmental Disabilities

For Striker, it’s both philosophical shifting and paradigm busting to get people to understand how valuable it is to be a full member of a community. “I think most people exclude persons with disabilities, not from a willful sense of entitlement or aim at segregation, but merely by a lack of recognition that a person with a disability often needs accommodation to achieve those same ends that we achieve without accommodation.”

The road to employment is a challenging one for anyone in this economy, but for the person with a developmental disability, it’s like climbing Mount Everest. Lemus was born in England and was adopted by a military family, and when the base closed in the UK, they ended up at Fairchild.

He’s been involved in the I/DD community as a self-advocate for 10 years, getting his start in the field as a transition student volunteering with the local Arc. He’s been an AmeriCorps worker and is on the state board and is vice president of the Spokane chapter of People First in Washington. There are plenty of years of volunteering for John to build up his resume.

Unfortunately, even in the supported employment and people first community, the types of jobs adults with I/DD get are many times the rough and tumble ones, sort of on a lower caste than what neurotypicals would accept.

Not that a job should be scoffed at; however, Lemus sees this generation of folk as more demanding. “Many individuals with I/DD who are younger are looking for something different than the traditional 4’fs: Food, Foliage, Factory and Filth. One issue that needs to be addressed is the lack of tangible job training for individuals with developmental disabilities so that they can enhance their skills.”

It’s a no-brainer for folk like Holloway and his wife Cindie, with a son with a severe disability, that life as neurotypicals see it is not that which the developmentally disabled person experiences. That’s the history of the Arc – it started in 1950 with parents and community activists questioning why they were raising kids at home possessing much more intelligence than the school systems had given them credit for. There were three big “dragons to slay” in the developmental disability community, Holloway pointed out: education, employment, and community living.

In 1951, 12 parents bought a house on Sinto Avenue and started a school for their children. A year later, Spokane public schools took over. The state of Washington was the first state that opened public schools to kids with handicaps – Education for All act (1974). “The Arc was the brainchild of it all – a bunch of moms getting together . . . very much an example of grassroots activism and organizing.” There are 730 chapters in the US, a dozen in Washington.

United Cerebral Palsy has a somewhat parallel history centered around parents of children with cerebral palsy.

“After assisting individuals with developmental disabilities to secure real jobs in the community since 2006, I have witnessed a myriad of ways in which employment leads to self inefficiency,” said Melissa Miller, director of Employment Solutions with United Cerebral Palsy of Oregon and SW Washington. “One of the most inspiring and affirming realities is that most individuals with developmental disabilities who start out working only a few hours of work per week, over time want more: more work, money, social capital and the power that comes along with being an earner. Many individuals with developmental disabilities want to get off of Supplemental Security Income, pay taxes and stand on their own two feet. Employment fosters further employment and is a win win.”

Working with Miller and her team of job developers and coaches, I have come to appreciate how effective personal relationships with the business community is in getting adults with huge hurdles in front of them employed. It’s clear that many business owners and managers are willing to help citizens with developmental disabilities, but time and again I have found that many say they never been approached and asked.

Imagine the following prejudicial statement echoed by many: people with developmental disabilities can’t be hard-working members of society. How wrongheaded is that? It’s a good economic choice to hire folks with I/DD since they are dedicated, work hard, and those around them also work harder because they have a more diverse workplace. Productivity goes up, Holloway says, and in one case, at a local assembly line, the neurotypicals and workers with I/DD compete head-to-head equally.

“We Just Want What Everyone Else Wants”

What does self-reliance look like for someone with a disability? For Striker, that’s a never-ending story: “Once again, doing all the things you and I take for granted. If I am hungry, I can make a sandwich in the home I bought with money I earned from my job. For a person with a disability, that simple situation is often, sadly, merely a fantasy to be hoped for and longed for, as opposed to a situation that can be experienced on a daily basis. To be able to use the restroom without help, to be able to get transportation to a place they want to go by themselves are all examples of things we take for granted but are all-too-often the dreams of a person looking for self-reliance.”

There is a challenge still in achieving full inclusion and bridging some real biases in the neurotypical community about who these people are who have been labeled “adults with developmental, intellectual, and/or psychological disabilities.” Many do not have physical barriers to working, and others have co-occurring diagnosis that make their disabilities more severe.

For a self-advocate like John Lemus, he worries about the very real outgrowth of a bifurcated and silo-ed society, the same one that places those in the have’s and have’s not categories: “I’ve been at Skils’Kin for three years. I thought having a job would be the golden ticket for inclusion. I still have challenges being included outside of the disability community bubble. Slowly Spokane is becoming a place where people with developmental disabilities are included organically in the community outside of the status quo of programs that foster what I have coined as Manufactured Inclusion, i.e., Best Buddies, Special Olympics, day programs. Many neurotypicals find it hard to believe that a person with developmental disabilities can do the job that I am doing.”

The End

Note: Often used essay for parents who are new to being parents of children with developmental disabilities!

“Welcome to Holland”
1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

NOTE — I’ve said it once, I’ve said it a thousand times: it’s about narrative, about the local, the neighborhood scale, and all the crap from DC to LA, from Chicago to the Ivy League and Stanford creeps, the real news is what you mother and my grandfather are doing, and how the big corporate class, the crass felons in government, the shekel thieves, all those MBAs and punishment class folk, the entire One Percent and 19 Percent groping for more of their sick-feeding money, well, it’s about how all those national and transnational antics will spread their pathogen into your and my state or county or city.

  • This story, originally appearing in Spokane Living Magazine. 
  • Paul Kirk Haeder has covered police, environment, planning and zoning, county and city politics, as well as working in true small town/ community journalism in Arizona, New Mexico, Texas, Mexico and beyond. He's worked in prisons, gang-influenced programs, universities, colleges, alternative high schools, language schools, and PK12 distrcits. He organized part-time faulty. His book, Reimagining Sanity: Voices Beyond the Echo Chamber (2016), looks at 10 years of his writing at Dissident Voice. Read his musings at LA Progressive. He blogs from Waldport, Oregon. Read his short story collection, Wide Open Eyes: Surfacing from Vietnam now out, published by Cirque Journal. Read other articles by Paul, or visit Paul's website.