Transitional assistance for special needs young adults

EDITOR’S NOTE: This is the final installment of a series exploring issues faced by families who care for special needs adults.

His name is synonymous with the cutting edge medical research performed at the Banner Sun Health Research Institute.
But what many in the Northwest Valley may not know is Dr. Joe Rogers, director and senior scientist with the  Roberts Center for Alzheimer’s Research at Banner Sun Health Research Institute in Sun City, and his wife, Mimi, are the parents of a 23-year-old daughter named Dylan who has Down syndrome.
And because they recognized the need for more services for special needs young adults, Mimi founded a non-profit organization, One Step Beyond, which is geared to helping others like Dylan develop life skills, vocational training, recreational activities and supportive residences.
“We want to help them reach a higher level of success and happiness,” Mimi said.
Dylan, the Rogers’ second child, was born while Joe was at the University of Massachusetts. In addition to Down syndrome, Dylan was born with a congenital heart defect, which Joe said can occur in about 70 percent of Down syndrome babies.
The Rogers had no idea they were going to have a child with Down syndrome.
“I was shocked,” Mimi said. “When I was in school, I had very little contact with those with Down syndrome, so it kind of scared me.”
“I had the stereotyped idea of what they are, but there was never a question Dylan wouldn’t be with us,” Mimi said.
Mimi said they received a lot of help in the beginning in Boston, which had a good support network in place for new parents of special needs children.
The family relocated to Sun City where Joe took the helm at the Sun Health Research Institute.
Mimi said they networked and socialized with other families with special needs children as Dylan was growing up, so she knew there was a need for a transitional program for young adults in the Northwest Valley.
Mimi said she and other parents organized social opportunities for their special needs children as they grew older, creating peer groups and activities so they could have friends.
Through the informal socialization opportunities, Mimi realized  there were needs not being met in the community.
“When we started the (One Step Beyond) day program, there was no organized effort to have the special needs kids connect after (school),” Mimi said. “So we make it possible to have them go out to dinner and have friends. It’s something we (those without disabilities) take for granted.”
Dylan graduated from Glendale’s Mountain Ridge High School’s special education program two years ago, but is not ready to live on her own yet, the Rogers said.
“She’s really good at cleaning and laundry, and can cook pretty well,” Joe said. “She can be Phi Beta Kappa at laundry folding. She is very precise and good at it. What she does do, she does extremely well.”
“She’s very determined,” Joe said. “She will never let it go if she says something and she knows you didn’t understand her. She will want you to say it back and repeat it so she knows you understand.”
Dylan also works part time doing custodial work at Theater Works in Peoria.
“What I learned from Dylan, and why I started the organization, is it’s really about their abilities and not their disabilities,” Mimi said. “We need to have high expectations, because they really can do a lot if we believe they will. They can work, but they may always need supervision.”
Joe said even though he works in Alzheimer’s research every day, he has not delved into the research linking Down syndrome with Alzheimer’s disease.
“I’ve been trying to figure out Alzheimer’s disease,” Joe said. “My interactions with Down syndrome have been personal and with my family, and not on a professional level.”
Joe advises women who are considering a high risk pregnancy to have an amniocentesis and other pre-natal testing to determine if their baby is developing normally. Then they are better prepared if they should have a baby with a developmental disorder.
Joe said he isn’t advocating for an abortion if an abnormality is detected, but rather for the parents to know what to expect when their child is born.
“Being prepared is a good thing, and we are advocates for that,” Joe said.
Mimi formed One Step Beyond in 2003, an organization which helps teens and young adults like Dylan transition to adulthood with a day program, vocational training for special needs adults and private housing.
It serves about 100 students, 20 of them home-based. The participants range in age from 21 to 37, since special needs children graduate from high school at 22.
“We focus on providing those with developmental disabilities the same opportunities we take for granted, including how to live independently, cooking for oneself, understanding safety symbols,” Mimi said. “And we also give them access to the community, go to the mall, ball games. Special needs adults need supervision, so we provide opportunities for them to connect and make friends.”
Mimi said working with developmentally disabled young adults has its rewards.
“It’s such a rewarding way to spend the day,” Mimi said. “It surprises me when they are about to try certain things because they are totally non-judgemental, They are very loving and innocent. And the least-functional people are often being helped by the higher functioning ones.”
In 2007, One Step Beyond began a culinary training program and catering company with grants from the United Way and the Pulliam Foundation.
The catering company provides employment for 22 special needs adults.
The organization has a professional kitchen as part of its facility, at 9299 W. Olive Ave., Suite 311 in Peoria, where participants can do internships in the catering company and be an employee.
One Step Beyond also owns four supervised residences in Surprise, Peoria, Scottsdale and downtown Phoenix, which house two residents each, with staffing provided.
Mimi said residents contribute about half of their Social Security payments towards the residence’s operation and rent. The organization picks up the other part.
“We (focus on) responsibility, taking responsibility for yourself,” Mimi said. “It’s a great joy each of us should have.”
For information about One Step Beyond call 623-215-2449.
Joy Slagowski may be reached at 876-2514, or jslagowski@aztrib.com.