Lives, not limits: Life's WORC helps the disabled

Ingrid Hughes is a busy speech pathologist with a full-time job and a teenage son with autism, but if her phone rings and it's Life's WORC calling, she'll readily "drop everything" to take the call.

Her devotion to the Garden City-based nonprofit is mirrored by the 2015 "Celebrity Apprentice" runner-up Geraldo Rivera. On the latest season of the NBC show hosted by real estate mogul Donald Trump, Rivera, a Fox News correspondent, raised $725,000 for Life's WORC, whose mission is to provide services and support that enable individuals with developmental disabilities and those with autism spectrum disorders to live full and productive lives.

"This is a lifelong crusade for me," Rivera said before the finale last Monday, where he lost to former "Entertainment Tonight" correspondent Leeza Gibbons.

Though Rivera's defeat was a disappointment to those who support Life's WORC, they appreciate his efforts at putting the charity first.

"To me he will always be a winner," said Victoria Schneps-Yunis, of Roslyn Harbor, the crusading mother who founded Life's WORC in 1971.

The same could be said for Hughes, 49, of Garden City. She is one of about 50 volunteers -- some of them parents of children with such disabilities -- helping Life's WORC carry out its mission by raising funds and offering their services.

Many of the volunteers are beneficiaries of a crusade led by women, and eventually men, who marched and picketed in the 1970s to close the infamous Willowbrook State School on Staten Island after Rivera, then a reporter for ABC Channel 7, exposed overcrowding and unsanitary conditions at the school, which housed 5,400 children, most of them abandoned by their parents.

Life's WORC is the outgrowth of the Women's Organization for Retarded Children (WORC), which Schneps-Yunis started with her friends and neighbors to do volunteer work for the Willowbrook children before public outrage led to its closing.

Schneps-Yunis, publisher of three magazines and a chain of seven community newspapers, including The Queens Courier and the Home Reporter in Brooklyn, was one of the crusade leaders. She had a daughter, Lara, in the Infant Rehabilitation Center at Willowbrook. She said Lara -- who died in 1985 at 17 in a Life's WORC group home in Bayside, Queens -- was "brain damaged at birth, could not speak, couldn't sit up, would never develop as a normal child," and needed constant care.

"We looked for a place that would take my daughter, but there were few places that took a child as handicapped as she was," Schneps-Yunis recalled. "In those days there were no day programs for children with developmental disabilities; no occupational and physical therapy."

These days, Life's WORC officials and parent volunteers are excited about a new Family Center for Autism the agency is opening in the spring next to its headquarters on Franklin Avenue in Garden City. The center will offer art, dance and other activities for clients, their siblings and other family members "so that a child may go to art class and the parent can go to cooking class," said Janet Koch, Life WORC's executive director. "It's similar to a community center or a YMCA."

The center will be privately funded with contributions such as Rivera's.

A watershed moment

As a result of a federal class-action lawsuit, the state was ordered to establish group homes in the community, and Life's WORC became one of the first organizations to open one, in Little Neck, Queens.

Rivera, 71, who had become a supporter of WORC, organized fundraising concerts featuring John Lennon, Yoko Ono and other entertainers to help WORC open the home in 1977. It housed six children.

The home was the target of death threats and lawsuits from neighbors who "didn't want our kids on their block," Schneps-Yunis recalled. "They wanted it in a manufacturing zone."

The neighbors sued WORC for violating the city's building code, "but we won the right for all group homes to be in residential neighborhoods," Schneps-Yunis said.

"From there, we grew and grew until now we have 40 group homes in Queens, Nassau and Suffolk," Schneps-Yunis added, with a paid staff of 800 providing lifelong support through an array of programs and services for more than 1,400 developmentally disabled individuals, people on the autism spectrum and their families.

Clients range from toddlers to senior citizens. More than 221 are in supportive group homes. They receive learning at home, in the classroom and community; occupational, physical and speech therapies, psychological counseling, behavioral intervention in schools, after-school and weekend recreational activities; and job and skills training needed for independent living.

To have a child admitted to a group home, parents must start at what is referred to as "the front door": the New York State Office for People With Developmental Disabilities. The agency determines who is eligible to receive service. If the child qualifies, the state provides a service coordinator, and the child must go to a group home that has an opening. However, parents can express an interest in a Life's WORC facility.

The nonprofit's name was changed to Life's WORC about 10 years ago to reflect its new mission: providing lifetime comprehensive services for the distinct population it serves, most of whom are profoundly handicapped, Schneps-Yunis, said.

"They really sought to help people lead dignified lives in a typical residential setting," said Koch, who lives in Commack. "We took most of the people we could from Willowbrook."

Life's WORC operates on a budget of more than $40 million. Though Schneps-Yunis said 93 cents of every dollar goes toward Life's WORC programs, reduced state and federal funding due to efforts to consolidate service providers and reduce Medicaid costs have raised concerns.

"They're affording less and less money . . . and that can be limiting to the individuals we serve," Koch said. "We must now turn to caring individuals and businesses who want to make a difference in the lives of people with disabilities and autism."

Hughes' son, Karl, 18, one of her three children, lives at home but receives services from Life's WORC. "He had significant behavior issues that impacted his ability to join in group activity when he was young," Hughes said. "I contacted them when he was 11 and they embraced me with open arms. He was very challenged. They have helped him become the man he is today."

Hughes' experience drove her to volunteer with the nonprofit, where she helps with fundraising, event functions "and anything else, from helping the kids sit down to helping one who might need to go to the restroom."

A parent, and a volunteer

Christine Pusateri, 47, of Williston Park, has three children. Son Nicholas, 17, has autism, and Pusateri said Life's WORC has helped him just as she helps other parents through the nonprofit's programs.

Pusateri, a speech pathologist and a clinical director for Blue Sea Educational Consulting in Huntington, volunteers as a community liaison for Life's WORC. She is also on the Parents Advisory Board, discussing programs with parents and giving them an outlet for their frustration and uncertainty.

"It's very hard when you have a kid with special needs," Pusateri said. "They [parents] don't have hope. They don't know who to talk to to get help. Life's WORC is very good at addressing issues."

And according to Pusateri, the nonprofit is equally good at settling down a high-octane spirit prone to frequent outbursts. Exhibit A: her son Nicholas.

"His behavior was out of control," Pusateri said. "He was yelling and screaming. The more I volunteer for and work with the people from Life's WORC, the more I feel Nick has a good future. I will continue as a volunteer. They do things with their heart."

Lynne Koufakis, 55, of Manhasset, is a volunteer on the center's board. "It could really help a lot of people," she said. Koufakis has four children. Two of her three sons -- Jared, 21, and Jake, 18 -- are autistic.

Koufakis donates money and helps with the agency's annual golf outing and gala fundraisers.

"Most people can't even deal with it, much less get involved to help others," Koufakis said. "I made a decision to help."

According to Koch, volunteers are vital to Life's WORC because of their commitment to the individuals the nonprofit serves and the relationships clients can build with people other than staff.

"Being part of the community is part of their desire," Koch said. "Working with volunteers helps facilitate those kinds of relationships."

Volunteer spotlight: Donald Barrick

Donald Barrick arrived at a Life's WORC gala 12 years ago to have some dinner and see a friend honored. By the time the evening was over, he had decided to join the Garden City-based nonprofit in its mission to help the developmentally disabled live full and productive lives.

"It was the presentation by a Life's WORC official at the gala that really caught me," said Barrick, 46, owner of RMP Capital Corp., a commercial lender in Islandia.

"I was very touched by what they do and the population they serve. I have the ability to accomplish anything I work hard enough to accomplish in life; the developmentally disabled don't have that ability."

Life's WORC provides an array of services for developmentally disabled individuals and those with autism, such as occupational, physical and speech therapies, psychological counseling, after-school and weekend recreational activities; and job and skills training.

Barrick said he had achieved his goal of building his business and spending time with his family and felt ready to start giving back.

"I was in love with their mission," he said. "It was a locally based organization and this was something you could see and touch. When you spend time and dollars you can see the [group] homes where the money and time went; you see the individuals who are benefiting."

Barrick started out by spending a couple of hours a week volunteering at the nonprofit, and eventually began helping with fundraising, driving people to events and raising awareness through social media and networking.

Two years ago he became chairman of the board, a role in which he spends about 20 hours a month making decisions about funding, opening new homes and assessing "where we are now and where are we going to be years from now."

Barrick said he gets satisfaction from knowing he is giving back and helping, as well as the friendships that are formed.

"We have incredible staff with capabilities they could use in other places, making a lot more money, but they're working for Life's WORC and love what they do," he said. "It makes you feel good to not only help the population, but to be part of the team doing it."

Looking to volunteer?

Volunteers are needed at Life's WORC's Garden City headquarters and its Glen Cove, Deer Park and Bay Shore locations to work with leading professionals in the fields of developmental disabilities and autism.

Volunteers 16 and older can help with reception, recreational activities and setup and cleanup of art projects. They can share special musical or artistic talents with children participating in the agency's array of programs, and foster social interactions among them.

Some volunteers also go on fundraising walks and accompany staff and program participants on local field trips.

For more information contact Roseann Gertler, Life's WORC volunteer coordinator, at Rgertler@Lifesworc.org

YOU MIGHT CONSIDER . . .

The Association for Habilitation and Residential Care (AHRC), founded by parents in 1949 and with headquarters in Bohemia and Brookville, serves 2,500 people each year. Volunteers help at special events. They can participate in and register people for a Polar Splash, scheduled for March 7; run rides and other activities at a barbecue for AHRC families in July; and be part of a fundraising 5K run in Southampton, also in July.

Contacts: 631-585-0100 for Suffolk AHRC

Jerri Walker, 516-293-2016 for Nassau AHRC

Family Residences and Essential Enterprises (FREE), established in 1977 and also by parents, is based in Old Bethpage and supports more than 4,000 individuals. Volunteers are sought for beautification and clerical projects at the agency's residential locations; and for sidewalkers and leaders in the therapeutic riding program at its Saddle Rock Ranch in Middle Island.

Contact: 516-870-1670; www.nwsdy.li/FREE

For more information and volunteer opportunities, contact the LONG ISLAND VOLUNTEER CENTER at 516-564-5482; longislandvolunteercenter.org