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 children.

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 country.

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 million dollars.

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 events.

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 UCP¹s 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 management–really, 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 thatŠto 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 qualifications.

CC: Not to mention your prior involvement with UCP and the Spastic Children's Foundation.

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 them–some 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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