Corrections or additions?
These articles by Phyllis Maguire and Michele Alperin were prepared for the December 18, 2002 edition of U.S. 1 Newspaper. All rights reserved.
HELPING HANDS: 2002
Leigh Photo Finds A Place For Autistic Workers
Twice a week at lunchtime, a van pulls up to the
Everett Drive warehouse that houses Leigh Photo & Imaging. A three-man
team gets out for a whirlwind hour of office cleaning, scrubbing and
mopping their way through the company’s kitchen and bathrooms, production
studios, and offices.
While there is nothing unusual about a clean office, the crews that
Leigh Photo employs are unique: The two men who actually do the cleaning
have autism, while the third is their "job coach," a specially
trained assistant who supervises their work and prompts them to do
their next task.
"In many parts of the country, people with autism get institutionalized,
medicated, and restrained," says Peter Dawson, Leigh Photo’s owner
and president who has employed the crews for the last five years.
"In Princeton we’re very lucky to have services that train autistic
people, keeping them out in the world and working."
And the Eden Family of Services, which organizes and sends out the
cleaning crews, is fortunate to have the support of the 41-year old
Dawson, a businessman who for more than a decade has lavished time
and energy on this internationally-known organization that provides
lifespan services — including vocational training — to people
with autism.
Now a member of Eden’s board of directors, Dawson, who lives in Pennington,
brushes aside the notion that giving back is some kind of obligation.
"I do it because I enjoy it," he says, pointing out that the
Eden cleaning crew usually spends several minutes with him in his
office, asking about his Thanksgiving dinner or his upcoming plans
for Christmas, before moving onto their next cleaning job.
Dawson also points out that community service has been a fast track
to making personal friends and business connections that have helped
him grow his business, a corporate photography studio and lab (www.leighimaging.com).
Even more important, the time he gives to Eden and other nonprofit
organizations helps him realize two important personal goals: fostering
independence and proving that there are many different routes to a
successful, meaningful life.
"Setting up a soup kitchen has real value, but just giving people
a meal is a band-aid," Dawson says. "You’re better off teaching
them how to feed themselves." Eden’s cradle-to-grave services
fulfill that role, he continues. From therapeutic interventions with
babies diagnosed with autism, through schooling and vocational training,
"Eden isn’t just slapping band-aids on disabilities," Dawson
says. "Instead, it’s providing a fix."
Dawson discovered his own vocation growing up in Montgomery, where
his mother was a homemaker and his father owned his own stock brokerage
firm. (His father died earlier this year.) Forbidden to watch more
than an occasional hour of television, Dawson spent time instead in
the small darkroom his father set up in the basement.
"He used to process film down there," Dawson remembers. "I
eventually pushed him out and made it my own."
Living near a bad S-curve on Route 518, Dawson was often jolted awake
by the sound of crashing metal and breaking glass. Rushing on his
bike in the dark to the accident scene, he would snap pictures, process
them in his basement, then peddle the five miles to the Princeton
Packet offices where he would get $3 and a published photo credit
— already a budding photographer/entrepreneur by age 12.
He pursued photography in the Montgomery schools, spending a lot of
time in high school in the school darkroom. But he vividly remembers
that students who hadn’t discovered a similar passion and weren’t
college-bound, "were labeled `losers,’ and got lost easily in
the educational system," Dawson says.
"People who would go on to make excellent livings as electricians
or auto mechanics often seemed to be denigrated because they weren’t
driven to a college curriculum," he claims. "We need trades
people just as much as other kinds of professionals, and I think organizations
and schools need to give them a lot of encouragement." He keeps
telling his wife Kristin — a statistician at Bristol-Myers Squibb
who is expecting their first child in March — that he intends
to raise at least one child to be a plumber.
That desire to encourage vocation motivates not only Dawson’s work
with Eden but with other area organizations as well. Long an active
member of the Princeton-Corridor Rotary Club, he also sits on the
board of the Mercer Community College Foundation, raising funds for
scholarships. And he is involved in the Career Development Awards
program, which was started by the late Henry Chauncey, ETS’s founder,
to grant scholarships to students in two-year vocational training
programs.
But Eden gets the lion’s share of Dawson’s spare time. He heads the
steering committee for Eden’s facility in Chaplin, Connecticut, the
Wawa Education and Retreat Center, the world’s only recreational facility
for people with autism. The retreat is open year round but is particularly
active in the summer.
"When school is out and autistic students take the summer off,
they can really lose a lot of ground," Dawson says. "The camp
gives them recreational opportunities that reinforce the kind of therapy
they receive the rest of the year." Back and forth between the
camp a dozen times a year, Dawson says he is involved in every aspect
of the facility, from helping decide long-term strategy to painting
bunkhouses and splitting firewood.
He is also busy lining up corporate sponsors for this year’s Eden
Dreams, the organization’s white tie dinner dance and major fundraiser
held for 15 years now at the Hyatt Regency Princeton. This year’s
Eden Dreams takes place Saturday, January 18, while another fundraising
event — Eden Moon Over Monaco — will be held at Philadelphia’s
Kimmel Center for the Performing Arts on Saturday, March 29.
Dawson also takes every opportunity to urge other Princeton area businesspeople
to use Eden’s vocational programs. He persuaded U.S. 1 publisher Richard
K. Rein, for instance, to use an Eden team to stock two dozen news
boxes on Nassau Street, at the Princeton Junction train station, and
on Route 1 with new issues every Wednesday. Dawson convinced the management
of Top Knobs, a Hillsborough company that used Leigh Photo to produce
a catalog, to use Eden-trained workers to pull and package knobs,
as well as construct the knob display boards the company sends to
places like Home Depot.
And he continues to employ Eden trainees in his own business. In addition
to the twice-weekly cleaning crews, Dawson also hires Eden members
to collate slides for big presentations his company creates for corporate
clients.
"Autistic people really excel at the types of repetitive tasks
that other employees get tired of very quickly," Dawson says.
"That frees up my staff to do other things."
Autism is a neurological disorder that strikes one in
600 toddlers, affects four times more boys than girls, and causes
lifelong disabilities, particularly in the areas of language and social
skills. Autistic people also typically display rigid or compulsive
behaviors and, without intervention, can withdraw into a private world
where they lose the ability to interact and learn.
And the incidence of autism is on the rise. California has seen a
600 percent increase in autism diagnoses since 1987, says David Holmes,
Eden’s founder and president (www.edenservices.org) — while autism
diagnoses in New Jersey have grown 400 percent.
"Sure, we’ve gotten better at diagnosing the disorder," says
the 54-year old Holmes, who is also chair of the panel of professional
advisors to the Autism Society of America. "But other factors
have to be in play, and we’re trying to find out what they are."
Pregnant women and young children are now exposed to many more environmental
toxins than ever before, Holmes points out, as well as hormones and
chemical food additives. And although recent studies found no link
between childhood vaccines and autism, the issue of childhood vaccination
as a factor in spiking autism rates remains controversial.
Holmes has been looking for ways to integrate people with disabilities
into the abled world since he was a child. When he was 12, his mother
— who was a nurse — took him as part of their church youth
group to a mental institution to cheer up the residents, he recalls.
"It was a real eye-opener, a life-defining moment," he says.
"I recognized that there is a whole other world of people who
are locked up, and that there was something really wrong with that
picture."
He came face-to-face with more patients when he got a college job
working for another institution, driving through the countryside at
night looking for "elopers" — people who had escaped.
"I told a professor that I needed to quit my job because it was
too depressing," says Holmes. "He said, ‘Don’t be depressed
— do something about it!’"
Holmes did do something about it, majoring in education
at Western Connecticut University, getting a doctorate from Rutgers,
and then serving a fellowship at an institution in Monmouth County,
where he worked with autistic students for the first time. His success
there led in 1971 to a teaching stint at the Princeton Child Development
Institute (PCDI), a research-oriented facility that has had great
success "mainstreaming" autistic children.
Holmes left PCDI in 1975 to found Eden, where the therapeutic approach
is applied behavioral analysis, a program that originated with behavioral
science guru B. F. Skinner and was adapted to teaching autistics by
U.C.L.A. interventionalist Ivan Lovaas. The technique relies on intense
therapy to teach children how to perform tasks, with Eden’s educational
facilities using one therapist for every 1.5 students. When students
respond to requests correctly, they get positive feedback — such
as warm praise or a hug — from their therapist. Problematic behaviors
also get reined with corrective feedback, such as a sharp "no."
The original Eden Institute that Holmes founded almost 30 years ago
to educate children has now expanded to include year-round educational
services for autistic children age 3 through 21, as well as several
group homes and supported-living apartments.
There is the camp in Connecticut, as well as an Eden outreach facility
in South Fort Myers, Florida, that works with local school districts
and therapists. And there is Eden’s ambitious training programs known
as Eden W.E.R.C.s (Work Education and Resource Centers). The most
disabled of the adults in the program work in four different Eden
employment centers throughout central New Jersey, performing mailing
house functions such as collating and sorting for local firms.
The next training tier — and the one the Eden cleaning crews belong
to — is supported employment, where members work out in the community
under supervision. In addition to office cleaning, many Eden trainees
in supported employment work at Wawa Markets — one of Eden’s biggest
corporate sponsors — stocking shelves.
The highest tier is competitive employment. "We drive them to
their jobs and pick them up at the end of their day," says Holmes.
"Other than that, they hold jobs just like everyone else."
One Eden competitive employment participant, for instance, now does
data entry for a law firm. "Being able to work gives people dignity
and purpose," Holmes says. "I think you can gauge the health
of a society by how many opportunities they help create for those
among them who are disabled."
There are now about 100 people engaged in Eden’s vocational programs,
who work with clients such as Prudential Bache, Bohren’s Moving, and
the law offices of Herbert Hinkle. Among its educational, residential,
and vocational components, Eden provides services to about 450 autistic
people, while its outreach and consultation efforts encompass about
1,000 more.
With Eden headquartered on Eden Way off Route 1 near Harrison Street
as well as PCDI and the Rutgers Developmental Disabilities Center,
Princeton is now a world center for autism services. The organizations
now exert a strong pull to the area, Holmes points out, attracting
industry leaders who work here because of the therapeutic options
available for an autistic child.
But according to an October 22 New York Times article, less than 10
percent of autistic children nationwide receive the kind of therapy
they need. The same article stated that the cost of educating autistic
children averages more than $30,000 a year — more than many families
can talk local school boards into spending. (The Eden Institute tuition
for 10 months now runs $36,000.)
Some families become proficient in applied behavioral therapy themselves,
staying at home to work intensively with their child. "But typically,
a child with autism is placed in programs that are more generic and
that `contain’ the child, as opposed to enabling the child to reach
his or her potential," Holmes says. Even parents of autistic children
who get top-notch intervention find managing autism to be a life-changing
event.
"It can be analogous to having a child who is in the terrible
twos for life," says Holmes. "It can be needing line of sight
supervision forever for the child, and that’s a real burden on a family."
This year, Holmes says, the National Institutes of Health will pour
$55 million into research on autism’s causes and potential treatments
— $10 million more than last year’s allocations, but only one-tenth
the amount of federal dollars that get devoted to AIDS research.
New Jersey is at the forefront of states providing educational options
for children with autism, he continues. "But once they get to
the adult years, it’s really a disgrace. We have more services for
adults with autism here than in most other states, but there are still
huge waiting lists for programs." Frequently, Eden Institute graduates
experience "huge gaps" in services between when they graduate
and when they’re able to access vocational and residential services.
In 2001 Eden’s own budget topped $15 million, with 85 percent coming
from state and school district allocations. The balance — more
than $2 million — came through fundraising efforts.
Like Peter Dawson’s. Dawson certainly knows the meaning of working
your way up in a job — since he has been employed by only one
company in his entire career. Graduating with a B.A. in photography
from Rochester Institute of Technology in 1982, Dawson was promised
a job at Eastman Kodak in Rochester — a position that was put
on hold during a hiring freeze. Dawson’s father made it clear his
son was welcome back home, but only if he held down a job. Dawson
found one making black and white prints at night — at Leigh Photo.
The company was founded more than 50 years ago by Francis Leigh, a
Trenton photographer who specialized in industrial photography. Dawson
worked his way up to color printing, then worked in the production
studio before discovering what he calls his "true loves,"
sales and marketing. He bought out the Leigh family in 1991 and remains
the company’s sole owner. Leigh Photo then had eight employees, while
the staff now numbers somewhere "in the 20s," Dawson says.
While he won’t disclose company revenues, Leigh Photo has expanded
its list of corporate clients to include many of the area’s pharmaceutical
companies. But Dawson points out that the company still does photography
for the Lawrenceville School, one of Fran Leigh’s first clients, as
well as for some of the few remaining Trenton porcelain companies
that were a mainstay from the start.
But along with expanding the company’s corporate base, Dawson had
to steer it through a technological sea change.
"Fran Leigh was able to use the same camera for 40 years,"
he says. "I was the dummy who bought the business just as the
industry made a major shift to digital photography." Dawson’s
first digital camera, complete with printer and software, cost him
$150,000, he says. Where his predecessor may have used one piece of
equipment for decades, his shop now feels lucky when a pricey scanner
lasts four years.
Volunteerism has given Dawson a growing business, good friendships,
and a tight-knit community of colleagues and fellow volunteers. The
only thing Dawson has lost along the way is his original hobby. While
he might be in the market for a camera for his wife for Christmas,
and despite his early promise as a freelancer, Dawson no longer shoots
pictures. Instead, he has taken up woodworking.
"In high school the darkroom was right next to the wood shop,
so I kept hearing that whine of saws and sanders all the time,"
he says. He now spends up to a year crafting individual pieces of
furniture, and has turned out an armoire, several chests of drawers,
and a cradle as a gift for his sister.
But again, Dawson insists those achievements are no big deal. "I
make small pieces of wood out of big pieces," he laughs, "and
a lot of sawdust." He also helps create fixes that make a big
difference in people’s lives.
— Phyllis Maguire
Eden Way, Princeton 08540. Phone: 609-987-0099; fax, 609-987-0243.
Home page: www.edenservices.org
Constance Martin’s life choices reflect her growing
desire to give voice to the powerless in American society. Her decision
to become a Court Appointed Special Advocate (CASA) for a Mercer County
child was a logical step. Moving from her high school involvement
in community service and enrichment opportunities, to volunteering
in a free clinic during college, and finally to pursuing a master’s
degree in healthcare administration and getting a job in health policy
at the Center for Health Care Strategies, Martin has been developing
that combination of knowledge, skills, and empathy that make her a
successful CASA volunteer.
CASA volunteers work with abused or neglected children who have been
removed from their homes and whose futures are at the behest of the
court system-perhaps the most helpless individuals in America. Serving
as "the eyes and ears of the court," Martin advocates for
the interests of one of the 600 children in out-of-home placements
in Mercer County.
Although Martin herself is uncomfortable sharing any details about
her volunteer experience due to privacy concerns, her "boss"
in this process, executive director of CASA of Mercer County Lori
Morris, is able to provide perspective on the CASA experience. The
52,000 volunteers serving in the 950 CASA programs across the country,
she says, "are giving the children the biggest gift: a safe, permanent
home. They are helping to turn a child’s life around and give them
the opportunity to become secure, responsible citizens." What
often surprises her volunteers, she observes, "is that after one
or two months, they are the only consistent person in the child’s
life."
True to her generation, Martin connected with CASA of Mercer County
through a website, volunteermatch.com, that weighed her interest in
health care and her desire to learn more about the court system and
matched her with CASA.
After an initial interview, she had to complete an application, supply
full references, and undergo fingerprinting, but the real preparation
was an intensive 33 hours of training, including a court observation,
over a two-week period. The training, which involved role playing,
taught volunteers how to write a court report, interact with children,
spot signs of abuse, and respond appropriately to them. Volunteers
are also required to attend six continuing education programs each
year; the next one, for example, is about educating children with
emotional problems.
CASA volunteers, says Morris, are usually assigned one case at a time,
two at most. They work closely with both the courts and the Division
of Youth and Family Services (DYFS), carefully reading reports from
both. Morris emphasizes how important CASA volunteers are as an adjunct
to DYFS workers who "are so overburdened; they have a minimum
of 40 or more cases per case worker."
Because individual CASA volunteers are not hamstrung by the bureaucracy,
they can respond to each child’s specific needs. For example, if a
child’s drug-involved mother has been ordered into drug rehabilitation
and counseling, then a CASA volunteer may check that the mother has
been keeping her appointments. Or the volunteer may meet with a child’s
teachers and make sure that an IEP (individual education plan) is
developed, if necessary. Morris recalls one particularly creative
response: for a child who had been through multiple placements, the
only constant in her life was art; consequently, her CASA volunteer
recommended that the child be provided with art supplies.
For Martin, the first stage in her investigation, after reading the
DYFS and court reports, involved "rapport building" through
weekly visits with the child. The next phase required intensive information
gathering — from foster parents, teachers, principals, therapists,
doctors, and biological relatives — that she summarized in a report
to the judge.
"For example," says Martin, "if the child needs medical
care or treatment, my role is making sure that the judge knows these
things." After the hearing, she has been responsible for continued
advocacy on issues that the judge requested be followed up before
the next hearing. The goal of the whole process, explains Martin,
"is a decision whereby the child is in the safest place possible
and all the child’s needs are being met."
The real story about why Martin eventually arrived at the doorstep
of CASA of Mercer County lies in her life experiences. As early as
high school she had begun thinking about a service career, in health
care, an interest she attributes to her mother’s health problems.
"She has diabetes," says Martin. "I think part of my healthcare
focus came from seeing some of the challenges that she had to go through
when I was growing up."
In pursuit of her earliest goal of becoming a doctor,
Martin volunteered at a hospital and participated in an enrichment
program called Heartwarmers (sponsored by Bristol-Myers Squibb), where
she shadowed a family-care physician. She was also involved in Upward
Bound, a government program that provides opportunities for participants
to succeed in pre-college performance and ultimately in higher education
pursuits.
In tandem with her early bent toward health care, Martin displayed
an interest in the role that government exerts in people’s lives.
She was part of the Look Up to Cleveland program (sponsored by the
League of Women Voters), which "encouraged young people to be
more active in building a civic vision for the city and looking for
ways to improve it."
The program included students from both the suburbs and the city of
Cleveland. This experience may have contributed to the strong sense
of social responsibility apparent in both her career choice and her
volunteer commitments. In addition to her work at CASA, she serves
as a planning board alternate in Hamilton Township.
Martin grew up in Cleveland where her father was a high
temperature metal inspector for Alcoa aluminum, and her mother was
a homemaker. She graduated from Case Western Reserve with a degree
in anthropology in 1999. About midway through her college years, Martin
began moving away from a career in primary care and toward one in
health policy. "I felt that health policy would allow me to deal
with broader issues than one-on-one patient contact," she says.
Perhaps the turning point occurred while Martin was a volunteer at
the Free Clinic of Greater Cleveland as an HIV intervention specialist;
her job was to meet with adults who had come in for an AIDS test,
discuss their sexual practices, and help them formulate a plan for
safer sex. "It was an eye-opening experience in looking at the
under-served populations and the need for affordable healthcare service
in the community," says Martin. She notes that a majority of the
clinic’s patients were either uninsured or did not understand how
to access care within the healthcare system.
In her job as a program associate at the Center for Health Care Strategies
at 1009 Lenox Drive, Martin has come full circle and is helping just
the kinds of people she served at the Free Clinic. The focus of CHCS,
she explains, "is on promoting quality healthcare services for
low-income populations and people with chronic illness and disability."
At the center, she works with health plans that serve the Medicaid
managed-care population, using a Best Clinical and Administrative
Practices model with issue-oriented work groups developing projects
like improving birth outcomes and preventive care for children. Working
with the chief medical officer of a plan and another representative,
she helps them develop a project as well as measures to track its
success.
A current project is one in Trenton to improve maternal and newborn
healthcare, in cooperation with Children’s Futures, the program office
of the Robert Wood Johnson Foundation; Horizon Mercy health plan;
Henry J. Austin, a health center in Trenton; and other organizations.
Martin has been at CHCS since receiving a master’s degree in healthcare
administration from Ohio State University in 2001.
Whereas Martin’s job enables her to work effectively at the policy
level, it does not give her a chance for that individual contact that
initially drew her toward a career in medicine. Her CASA volunteering
fills that gap: "Coming from what I do every day, where we don’t
have the one-on-one contact with the people who we ultimately serve,
it’s interesting to be involved with the whole family structure and
the child." She likes focusing on these smaller units, gaining
an understanding of both the family’s and the child’s perspectives.
She also sees a relationship between issues affecting the child she
works with and the policy initiatives she deals with at work: "I’ve
gotten a better understanding of how issues affect people."
That perspective does not surprise Lori Morris, the executive director,
who describes CASA as "a real different volunteer opportunity
where you get your hands dirty. You’re not just licking envelopes."
The meaning of the CASA program for both the volunteers and the children
they serve is captured by Anna Quindlen in the foreword to her book
about CASA, "Lighting the Way: Volunteer Child Advocates Speak
Out:"
"This is not a process of `happily ever after’. . . . But it is
about being certain that the interests of the child are clearly understood
and articulated, even when there are no easy answers. It is about
visiting homes in which you are not welcome, and going to schools
in which teachers have given up hope. It is about meeting children
who recoil from a hug because they have never had one before. . .
. it is also about deep satisfaction and commitment, about people
who say they have become their best selves while trying to help one
child toward a good life."
CASA is looking for volunteers for its spring training. Interested
individuals can come to the orientation meeting on Thursday, January
9, at 7 p.m. For information, check CASA’s website at www.casamercer.org
or call 609-637-4910 and ask for Lori Morris.
— Michele Alperin
Pike, Building 4, Suite 113, Lawrenceville 08648. 609-637-4910; fax,
609-390-1735. Home page: www.casamercer.org
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