UCP Interview with New CEO Stephen Bennett
Up until the 1940s it was a common occurrence for children with cerebral
palsy (CP) and other disabilities to be hidden away, warehoused in institutions
or segregated from society for the majority of their lives. Due to a lack
of understanding and support, both by medical professionals and society
in general, parents and caregivers felt ashamed and somewhat responsible
for their children's disabilities. Little communication transpired between
the families of these children and without the vital link of similar circumstance
and commonality, everyone suffered.
In 1945, that all began to change. Two families from New York took it
upon themselves to join forces and gather other families interested in
not only finding, but also improving the services available to them and
their children with disabilities. Then-president of United Paramount Theatres
and ABC Television, Leonard Goldenson and his wife, Isabelle, teamed up
with prominent businessman Jack Hausman and his wife, Ethel, and put together
an ad that was placed in the New York Herald Tribune. The goal of the
ad was to engage families whose children had CP and other disabilities
and form a group that shared a common vision: to better the lives of their
Hundreds of parents responded to the ad and joined the original two families.
Thus, in 1949, United Cerebral Palsy (UCP) was born as a national organization.
Word spread like wildfire and affiliates began popping up all over the
Throughout the '50s and '60s UCP grew in size and stature as an organization,
at the same time gaining popularity and building momentum. Backed by powerful
connections in entertainment and politics, UCP began raising funds and
heightening public awareness surrounding not only CP, but other disabilities
as well. Film trailers produced by UCP included such famous Hollywood
celebrities as John Wayne, Gene Kelly and Joan Crawford. In 1950 the first
public telethon was broadcast and touched the hearts of the American people.
After nearly fifteen hours on the air, contributions reached almost one
1970 brought about a new logo and new ideas. UCP funded research that
resulted in helping develop a vaccine for the rubella virus (German Measles),
which had caused more than 20,000 births of children with CP. The remainder
of the decade brought about an important union with NASA. One evening
at a dinner party, Isabelle Goldenson turned and asked her dinner partner,
"If we can put a man on the moon, why can't we develop a lightweight wheelchair
for people with disabilities?" This question lead to the meeting of her
husband and Dr. James Fletcher who was director of NASA at the time. A
conference sponsored by UCP and NASA was hosted, exploring the use of
space-age technology for people with disabilities. Engineers at NASA developed
numerous groundbreaking pieces of equipment, such as the lightweight wheelchair
Mrs. Goldenson had inquired about as well as initiating research that
eventually resulted in motorized wheelchairs and communication devices
for people with all types of disabilities.
Despite difficult times economically, UCP continued to thrive in the '80s.
Affordable, accessible housing was next on the agenda. In 1983, the federal
Department of Housing and Urban Development and UCP co-sponsored a workshop
for architects in an attempt to create new solutions for the lack of accessible
housing. The hotel industry was also recruited to participate and as a
result, "respitality" was born. This program gave parents of children
with disabilities the chance to spend a weekend away from their home while
the local UCP affiliate cared for their child.
After 40 plus years as a successful organization, UCP's efforts as a disability
advocate were greatly rewarded. July 26, 1990 marked the day President
George Bush signed the Americans with Disabilities Act (ADA) into federal
law. This law resulted in all people with disabilities sharing the same
civil liberties and rights as people without disabilities. In an attempt
to ensure that the ADA was not only administered but also adhered to,
UCP created the annual watchdog report. This report acted as a report
card for businesses and monitored the impact of the ADA. Since 1992 this
annual survey has been in effect and it continues to improve the lives
and add to the independence of people with disabilities nationwide.
Consistently, UCP is ranked as one of the top, most efficient health charities
in the United States. Over 83 cents of every dollar spent goes toward
programs and services, which directly benefit people with disabilities
and their families. They are constantly searching for new ways to better
the lives of people with disabilities in all areas including home ownership,
health care reform, competitive employment and inclusive education.
As UCP evolves in the early years of this new millennium, the organization
continues to grow and change. Recent news from UCP includes the announcement
of a new leader, Chief Executive Officer Stephen Bennett. Bennett is no
stranger to UCP as he spent almost a decade serving as executive director
for the Los Angeles and Ventura Counties affiliate. During his run as
executive director he focused on developing and improving housing and
assisted living facilities for people with disabilities living in the
Los Angeles area.
His hiatus from UCP allowed Bennett to lend his skills and talents on
a business level to Pallotta TeamWorks as well as raising public awareness
and making AIDS Project Los Angeles (APLA) a national model for charitable
Upon returning to UCP, Bennett brings with him over 30 years of health
care and business leadership, making him an excellent choice as the organization's
CEO. In his new capacity, Bennett will guide and direct UCPšs nationwide
network consisting of 105 affiliates in improving the quality of life
and level of independence for people with disabilities everywhere.
ABILITY Magazine's editor-in-chief, Chet Cooper, had the opportunity to
discuss with Bennett the journey that brought him back to UCP and his
plans for the organization's bright future.
Chet Cooper: I heard you're a Texan?
Steven Bennett: I'm originally from Lubbock, Texas.
CC: What brought you to Los Angeles?
SB: I came out for college. Being a teenager in Los Angeles back in the
late '60s was great fun! After my undergraduate in Political Science,
I went to the Anderson Business School at UCLA. That was where I learned
managementreally, I had started already. I was a Peace Corps VISTA
volunteer in South Central Los Angeles, working with high-risk infants;
back then the organization was known as the Spastic Children's Foundation.
I was about 21 years-old and that is where I really got my first exposure.
In college, I began working as a nurse's aid in the intensive care unit
for men with severe disabilities. My job was bathing, feeding and being
a personal attendant. As far as life experiences at a very impressionable
age, it was probably one of the best things that could ever happen to
me. When you are able to help someone with basic living needs: bathing,
dressing and feeding, you really pay attention to the issue of human dignity
and respect for privacy. I think it is one of the biggest lessons you
can learn in life about respecting and accepting people for being people.
CC: In a recent article, ABILITY focused on the issues surrounding 'caregiver
burnout.' Did you experience any of that with this position?
SB: I'm sure I experienced it pretty regularly at the end of a long week!
(laughs) It can be very tough. I saw people that worked it in as part
of their lives and it takes a certain personality to be able to do thatto
not burn out.
CC: What initiated your initial transition to UCP?
SB: I set up a foster grandparent program for the state of California
with people at Pepperdine University. It was a program that paired seniors
with kids who have been removed from their homes. As part of that, I started
working with a professional staff person with Spastic Children's Foundation
and within a couple of years I was a co-executive director. I was about
24 or 25 years old. Spastic Children's Foundation then merged into United
Cerebral Palsy and became the Los Angeles UCP affiliate and that's when
things really started to take off.
UCP began working to get people out of state institutions and integrate
them into the community. Law 94-142 required public schools to accept
kids with disabilities, creating a change in the tenure of the isolation,
the segregation and the near imprisonment of people with disabilities.
That was followed with the coming about of supplemental security income
and we started receiving Medicaid through the state, Medicare for people
with long-term disabilities and there were some housing subsidies available.
This huge shift started the depopulating of state hospitals. The government
obviously wasn't funding community care, but we did get support for people
with disabilities to come back into the community. Organizations like
UCP were very active in developing housing and continue to be so. It was
a very, very exciting time.
CC: What prompted you to leave UCP?
SB: I'd been in the private sector and about every eight or nine years
I do public sector work. I took off two and-a-half years to work with
AIDS Project Los Angeles (APLA). I was CEO from 1989-1992, which were
really tough years. I've done some major projects with the American Psychological
Association as well as various other projects that have seemed to be interspersed
throughout my career. Almost a year ago, I took time off to just travel
the world and relax. Right after the first of the year I thought, "OK,
let's figure out what I am going to do." I wanted to do something more
in public service. I wasn't wanting to build another software company
right now. A friend called me and said, "UCP is looking for a new CEO."
Then another friend called and said, "Steve, you've got to look at this."
I looked at it and I thought that having been a VISTA volunteer, having
been very active in the movement to get education and SSI for people with
disabilities and also having been president of an organization called
Anchor, which is a trade association involving 600-700 rehab residential
treatment centers for people with disabilities, that I might have the
CC: Not to mention your prior involvement with UCP and the Spastic Children's
SB: I thought about all of that. Then I thought, "You know, I've done
a lot of private sector work. I've been a CFO. I know how to manage money
and raise capital."
CC: Now that you're the new CEO of UCP, how do you foresee the experience
differing from your time with APLA?
SB: When I went to APLA, it was a whole different world order. People
in the AIDS community didn't tolerate the kind of stuff that we learn
to put upon ourselves in the disability community. "What do you mean you
aren't giving us the drugs we need?" "What do you mean you are slowing
down these clinical trials and it is going to be four years?" "What are
you thinking?" That was the attitude about fundraising, about getting
leadership involved, about activism and about access to treatment and
care. The AIDS community actually went so far as to build a whole system
of social services just for themsome people called it 'elitism services.'
We weren't going to put up with it anymore. I think, in many ways, it
redefines not only what people can do, but what organizations can do.
The experience really opened my eyes. As you may know, APLA was very successful
in the early '90s by repositioning itself, marketing disease management
and triage, to actual social assessment of treatment and care. I look
back and I think, "How can those lessons be used now?"
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