Self-Employment: A Dream Comes True
By Kathy Broome (a.k.a. Tom Stearns’ Mom)
“Perinatal Encephalopathy (brain damage
from birth)…”
“Moderate mental retardation, IQ 55…”
“Mild Cerebral Palsy…”
These words hit me like a runaway train. It was 1980. Every parent’s worse nightmare was happening to me and my darling 2-year-old son Tommy. All I could do was cry as my little boy continued to zip around the doctor’s office. I had no idea of what was ahead. My hopes and dreams for his future and mine shattered into a million pieces. That was the day I stepped into the world of developmental disabilities.
I wish there had been a crystal ball or someone who could have told me what I know today: “You will both be fine. Life will be good. Tommy’s future looks bright. He was born at a good time. Thanks to other parents, self-advocates, and visionaries, TIMES ARE CHANGING for people with developmental disabilities.”
Fortunately we live in Alaska. I have witnessed many positive changes that have directly impacted the quality of our lives. Medicaid waivers, special home loan programs for home ownership, individualized funding for support services, person-centered planning, family supports based on individual need, the ADA, just to mention a few. I am proud to live in one of the only states without institutions for people with developmental disabilities.
Many other parents, individuals and groups, have blazed the trail for us. It is now our turn to join the ranks of advocates stepping forward to discover what is positive and possible. Tom has his own idea what he wants out of life. He has his own hopes and dreams for his future.
Tom is now 24 years old. He is happy and free in his community. He lives in a home of his own. Bruce is his professional roommate who receives a stipend to provide live-in support for his independence. He has a dog named “Greta,” a rabbit named “Brownie” (Brownie is jet black). Tom has a darling girlfriend. They are in love. She also has a developmental disability but Tom only sees her beauty and loveability.
Tom knows all of his neighbors. All the clerks at his grocery store know him and he knows them by name. He has an active social life and is active in his church. He volunteers regularly at the local animal shelter. He has volunteered at the fire safety booth at the state fair, working with firefighters teaching children about fire safety. His life IS good.
Employment has been a challenge.
Tom attended public school until he was 22. His school work experience involved the usual “food-filth-and-flowers-type”jobs. Before Tom left school, we gathered his circle of support together for a person-centered plan. We listened to Tom’s hopes and dreams for his future. We listed all of his gifts, preferences, and identified people important in his life and briefly went over his history.
Some things that we learned about Tom that could be used in directing his job search included the following:
• Tom wanted to be in charge. He wanted
to be the BOSS.
• He liked physical labor and is very strong (great gross
motor strength).
• He loves using tools and pounding nails (he has installed
50+ perfectly pounded nails into the door jam of his bedroom!)
• He has always wanted a job that used a radio or cell phone.
• He loves wearing a uniform with his name and title.
• He has always wanted to be a firefighter, soldier, or
policeman.
• He loves talking to strangers. He is a major extrovert.
• He likes to be moving around.
• He doesn’t mind getting dirty.
• He enjoys being in the community. He loves new experiences
and being “on the go.”
• He REALLY wanted a truck.
• He likes to see his work completed. A clear starting and
finishing point.
• He wants to make MONEY$$$$.
So how do we turn this information into a real job with real money? His IQ is still 55, he has mild cerebral palsy affecting his fine motor skills, he can’t read, write, or drive. Some days he has better attention span than others, and rarely he needs to stay home. I almost forgot—he also is affected by bipolar disorder. Other than that he’s fine.
After he graduated we tried the typical agency setting of supervised work groups with other adults who experienced developmental disabilities. He worked on a janitorial work crew at the National Guard Armory. This was not a good match. Cleaning up after other people was not on his list of things he liked to do or things he was good at doing.
Next he had a temporary job working for Special Olympics in another work crew in the office and warehouse (stuffing envelopes and janitorial). He worked 8 hours a week at minimum wage ($200/month). We tried to get his agency to do some job carving to find a job that was better suited to his interests and abilities before his job ended. We finally realized it wasn’t going to happen.
My husband Ron (Tom’s stepfather) and I started looking for better options. We checked the classified ads in the newspaper everyday for jobs that he might be able to do. After months of searching and brainstorming we finally hit pay dirt! “Wanted: Shipping pallet repairman…” BINGO!
Tom did not get that job. That might have been the end to this story, but it was just the beginning. My genius husband suggested that we try to help Tom start his OWN business recycling shipping pallets!
We had a lot going for us. Tom was willing and able to work. He had funding for supported employment. My husband had extensive business experience and business sense. I am quite an innovator and highly motivated (I’m a MOM). The three of us started making plans.
First and foremost we consulted with Tom to see if he wanted to do this kind of work. His answer was an enthusiastic YES!!!
I called around to find out who bought recycled shipping pallets and who wanted to dispose of surplus shipping pallets. (The company that had the ad in the paper offered to buy 40" X 48" pallets for $1.50 each).
We rented a U-Haul moving van on a few occasions and collected pallets from businesses that were happy to get rid of them and sold them to the shipping pallet company. Tom did well and enjoyed the work. We used respite providers and volunteer family members to be job coach/drivers during this trial period.
My husband and I took advantage of some self-employment educational opportunities.
We wrote a business plan.
We found out that if we could get a Social Security Plan for Achieving Self Support (PASS plan) approved that Tom could receive $639/month in SSDI money for approved business expenses and at the same time get SSI and State aid to the disabled to live on while he was getting his business going!
We had heard that it was difficult to get PASS plans approved and that it was even harder to get a self-employment PASS plan approved. We had nothing to lose so we decided to go for it.
We contacted Shannon Keaton in the PASS cadre in Seattle. We told her what we wanted to do, and what we had already done. We sent her our business plan and spent weeks completing the PASS outline found on the Internet. Shannon actually helped us. She told us what to change and add to our plan and BINGO it was approved on our second try. He will receive $639 from SSDI for approved business expenses (truck payments, gas and oil, insurance rental space, bookkeeping, advertising, business cards, invoices, safety equipment, uniforms, tools, cell phone etc.) for the next two years.
We found and bought a used 1985 box van. Tom now owns a truck that his job coach drives. (The truck’s name is “ Christine”). Tom is making truck payments.
We found an agency that had experience and an interest in providing individual job coaching for self-employment.
Our son’s case manager submitted an amendment for his Medicaid waiver to transfer the funding that was being used for job coaching in a group setting to cover the cost of an individual job coach for his own business.
Tom has a business license in his name for his new business—SELECT PALLETS. (Recycled shipping pallets sales and disposal. Saving trees, time, and money!” )
January 2nd of 2001 we opened for business. It took about six months of planning before we had everything we needed to get going.
The Anchorage Daily News ran a feature article
on Tom’ s business in February of 2001. From that article
we got three customers: a moving company, a cement additive company,
and the
Anchorage Daily News. Later we picked up an account from a pet
and garden store. By the end of the first six months in business,
Tom had collected and sold over 600 shipping pallets at $1.50-$4.00
each.
In the early months of operation our agency suggested an idea to supplement the pallet business by making cement decorative garden stones.
I learned everything I could about how to make the perfect cement garden stone. We ordered some molds, and tried some different methods of making and mixing cement. (I learned more about cement than I ever wanted to know.)
We finally came up with our “secret family recipe” for the perfect garden stone. We amended our PASS plan and built a 10" X 10" shed in Tom’s back yard. We made some samples and by summer we were ready to sell. We took custom orders and sold wholesale to two local businesses. We also rented space in a home crafter outlet store to display and sell our stones retail. By the end of summer we had sold over 200 garden stones. We have developed a procedure that Tom could do with the help of a job coach and we had many happy customers. Next spring we will make and sell them again.
Our first year has been successful beyond our wildest dreams. Tom loves his job. He loves being the Boss. He loves getting out into the community. He is very proud of his accomplishments. He is happy and successful in his work.
I do the banking and billing, and oversee operations. Ron is the sales manager. We have two job coaches who share a five-day workweek. We have a bookkeeper that keeps our records straight. Our agency pays the job coaches. Tom loads and unloads pallets, uses tools to repair pallets, mixes cement with a cordless drill and a mud mixer attachment, pours cement into garden stone molds for a perfect product every time.
Tom’s business continues to evolve. We are constantly reevaluating the business operations. We have a great team. We have monthly business meetings. We make adjustments as we learn more and the business grows.
Tom still wants to work for the fire department or police department. This week we found some cheap office sized snack vending machines in the newspaper. We hope to find a fire station that might like to have a catered vending machine for munchies 24 hours a day. If all goes well, Tom’s dream of working for the fire department may soon come true.
Self-employment has been the answer to the employment piece of the transition puzzle.
Tom is happy and free. He works hard five days a week and loves it.
The effects of his disability have been mitigated by the “ultimate in job carving”—SELF-EMPLOYMENT.