|
 Life’s WORC, established in 1971, traces its roots directly back to Willowbrook. Founder Vicki Schneps’ daughter Lara lived there. And, both Schneps and the agency itself have had a long and close relationship with Geraldo Rivera, whose investigative reports brought the plight of Willowbrook residents to the public eye. The first Life’s WORC home, whose residents all came from Willowbrook, is named for Rivera and was created with funding from the famous Willowbrook concert held by John Lennon.
Sidebar:
Values and Data: Guideposts for Staff Development
This year, as the agency celebrates its 40th anniversary, Life’s WORC provides residential care for  over 200 individuals with developmental disabilities who live in 36 separate homes throughout Queens, Nassau and Suffolk. Like other community-based agencies created in the wake of de-institutionalization, Life’s WORC has evolved far beyond just residential programs. The agency also serves more than 1,000 individuals – both its own residents and others living at home with their families -- through a series of programs including Medicaid service coordination, day habilitation, recreation, employment services and more.
With a budget of over $40 million and more than 800 employees, Life’s WORC also faces complex operational and management challenges – particularly at a time when government is cutting back on its funding to support services. However, Peter Smergut, who has served as Executive Director for the past 16 years, believes that the agency’s strong culture of high quality care – maintained through an elaborate system of “Value Surveys”, employee and supervisor evaluations, and performance-based compensation -- will enable Life’s WORC to ride out these difficult times. (See Values and Data: Guideposts for Staff Development.)
Residential Care
Over the past 40 years, Life’s WORC has steadily expanded the number of residential opportunities it offers to individuals with disabilities. After opening the Geraldo Rivera Home in Little Neck in 1977, the agency grew to a full dozen residential programs by the mid-1990s. With implementation of the State’s New York State Cares program, the pace of expansion picked up rapidly, tripling Life WORC’s residential capacity to a total of 36 homes over the next 15 years.
The agency’s residential programs serve people with a wide range of developmental disabilities. It continues to be home for over 33 people who were once residents of Willowbrook. Newer residential opportunities generally accommodate individuals whose families are no longer able to care for them at home. The Westbury Home, which houses four young men and two young women, opened in 2008. Five of the residents, who previously lived at home with their families, had effectively grown-up together while attending the same day school and programs. “They are lifelong friends,” says Program Manager Tara Jones Brooks.
Person Centered Planning
Residential opportunities are only one element of services that people with disabilities require. In addition to basic shelter and care, residents want to live as independent and productive a life as possible consistent with each individual’s abilities. And, Life’s WORC is dedicated to supporting those aspirations.
“We are very committed to Person Centered Planning (CPC). It’s evident in the quality of life that our people lead,” says Smergut. The CPC philosophy is intended to ensure that each person receives the supports that they need to achieve their own personal goals. In 1999, Life’s WORC created a full-time staff position dedicated to the development of person centered planning efforts. It offers a six-day PCP certification course for its own staff as well as other individuals and provider agencies.
Individuals in Life’s WORC residences participate in a broad range of habilitation, educational, employment and recreational programs.
“All of the Westbury House residents attend programs,” explains Jones Brooks. Plus, most of them also have jobs in the community. “Tommy works at Wendy’s. James works at AHRC. Brett works at McQuade’s Café and Meghan works in the Half Hollow Hills Library.”
After a hard day’s work, residents also need to play. “They go to Club 21 for bowling and to a Friday night drop-in with karaoke and a lot of other activities,” says Jones Brooks. “A lot of them also take Saturday classes at Nassau Community College. They do ‘sled hockey’ with practice on Tuesday and Saturday mornings. Brett’s dad is the coach.”
However, an inividual’s yearning for personal fulfillment can often go beyond these group activities, explains Smergut. For example, Steven Montfisten, a resident at the Life’s WORC Dix Hills home, lives with a severe speech impediment caused by traumatic brain injury following a childhood car accident. While Montfisten has trouble getting words out verbally, he has had no trouble getting them down on paper. The 27-year-old has written hundreds of poems expressing his feelings about a wide range of topics. Now, with the help of Life’s WORC Assistant Director Darrien Carlson and Psychology Program Director Brian Goldman, Montfisten has achieved his lifelong dream of hearing his words recorded to music. Producer Will Burton arranged for a number of performers to record lyrics written by Montfisten – now known professionally as “The Chosen One”.
Montfisten is not the only Life’s WORC resident finding self-expression through music. Two years ago, the agency launched its Life’s Connections through Music program, which provides interested individuals with the opportunity to play an instrument and/or sing with professional performers. The program includes a full-fledged “talent search” and culminated in a November 16th concert at the Bellmore Theater, featuring 31 performers from Life’s WORC and other agencies.
For many people, establishing personal relationships – including finding that special someone – is a particularly important life goal. “They want to date,” says Smergut. Making that happen for individuals with developmental disabilities can be a challenge. Introductions through Life helps people meet each other in a relaxed and supportive atmosphere. Last August, the agency hosted its second “speed dating” event which brought together 40 individuals from Life’s WORC as well as the Epilepsy Foundation of Long Island and YAI. The event had a Luau Night theme, complete with hula lessons, tropical fruit salad and punch. During the second half of the evening, each person had an opportunity to speak with twenty new people for six minutes each. Afterwards, they were given an “interest sheet” to check off the names of those individuals whom they would like to get to know better. By night’s end, 18 new matches had been made. Another was scheduled for February.
Having a home of their own -- and living independently – is the ultimate dream for many individuals. Life’s WORC is helping several residents to achieve that dream through use of Individualized Supports and Services (ISS).
“We have one young woman who had been living at home with her mom and dad,” says Bonnie Inderjit, Director of At-Home Residential Services. “She has a daughter of her own. Now she is able to live in an apartment with her daughter. She does need help and she gets supports.”
Other individuals have begun to utilize Personal Resource Accounts (PRAs) through which they can decide on the specific services they need and then select and pay for a provider. “We have two people in our programs who are on demonstration grants,” says Smergut. “They hire a person who works with them on employment. If they aren’t happy with that person, they can find someone else.”
In-Home Supports
The newest Life’s WORC residential program, a six-bed IRA in Wantagh which opened in April of 2010, may be the agency’s last… at least for a while. State budget constraints have put a hold on approvals for new residential programs by the NYS Office for People with Developmental Disabilities (OPWDD). “There is really no new residential development, other than for people coming back from out-of-state placements,” says Smergut.
As a result, waiting lists for residential opportunities, which had been reduced substantially through the NYS Cares initiative, have begun climbing again. “There are about 1,700 on the waiting list for Long Island,” says Smergut. “We have a few hundred people of our own in the Medicaid Service Coordination or ResHab programs who are on the list.”
The lack of new residential programs is colliding with a “graying” population of parents who have cared for their disabled children at home, but now no longer able to do so. “I have a friend whose son has developmental disabilities,” says Smergut. “For years they have been talking about when they should put him into a residential program, but they were never ready to make that choice. Now they are ready, but there is no place to go.”
Over the last several years, the State and providers have attempted to address these economic pressures by increasing services and supports for individuals with disabilities while they continue to live at home.
The Life’s WORC At-Home Residential Habilitation (Res Hab ) program has grown from serving just 22 individuals when Bonnie Inderjit arrived as Program Director in 2000 to more than 135 today.
“Our staff goes into the home and works one-on-one with the individual,” says Inderjit. “They teach them ADL (Activities of Daily Living) skills, money management, and recreation. They will do mobility training, going with the person from one place to another, reviewing the bus route, recognizing landmarks. They’ll help them with safety – what they should do if they get lost.”
These at-home services can be a vital support for families caring for an adult child with developmental disabilities. “We know how hard it can be for a family,” says Inderjit. “Sometimes they will feel like they have tried everything and it just isn’t working. We give them help and some respite.”
Life’s WORC staff can help these people achieve simple goals that once seemed impossible – dramatically improving the quality of their own lives and those of their family. “Parents will have more confidence that their child can safely travel from one place to another,” says Inderjit. When it comes to cooking, for example, she says that many parents will say they don’t want their child to touch the stove. “We start with the basics – using a microwave, making sandwiches,” Inderjit explains. “Next thing you know, their child has made them dinner. It’s a great accomplishment, something they never thought could happen.”
Life’s WORC Res Hab staff work with people for a certain number of hours each week – four, six, eight, twelve or even twenty -- based on the individual’s needs and the goals laid out in their service plan.
Unfortunately, State fiscal pressures are limiting the number of families to whom Life’s WORC can provide these essential services. “We have a waiting list of at least 80 people,” says Inderjit. “Families are desperate to get help.”
LifeLinks
Life’s WORC also provides center-based Day Habilitation programs for more than 140 people at its six program locations in Queens Village, Glendale, Garden City, Deer Park, East Rockaway and Old Bethpage. These LifeLinks programs help individuals to acquire and maintain skills that connect them to the community while enhancing their capacity to live independently. They include personalized, strength-based instruction and practice in communication, basic safety, personal care, mobility, domestic living, health care, money management and social skills.
Each DayHab programs typically serves between 20 and 30 persons, building relationships and friendships that can last a lifetime. A staffing ratio of 1:5 ensures an ability to meet the specific needs of each individual. Last July Life’s WORC won approval to expand its Old Bethpage program to serve an additional ten participants.
Autism
Life’s WORC has expanded its efforts to address the rapidly growing prevalence of Autism Spectrum Disorders in recent years. “It’s frightening,” says Smergut. “We’ve gone from 1-in-100,000 fifteen years ago to 1-in-160 or fewer now.”
The agency now provides services – including clinical supports and parent training -- to local school districts on Long Island. “We offer Applied Behavioral Analysis,” says Smergut. “We’re working with seven school districts now and looking to expand. They find it less expensive and more efficient to outsource these services.”
Making Connections is a socialization program for younger children, aged five-to-twelve, on the Autism Spectrum. It focuses on developing play and socialization skills while also offering respite for families.
Stepping into Adulthood is an after-school program for young people aged 14-21 with Autism or mild-to-moderate developmental disabilities. It helps them make the transition from high school into adult services.
MSC and More
Life’s WORC also provides Medicaid Service Coordination (MSC) that helps over 400 people with disabilities navigate the complex world of eligibility and entitlements in order to access government-funded services and supports.
In a related vein, the agency has begun offering Life’s WORC Community Trusts as an effective estate planning tool through which families can ensure appropriate care for children with disabilities.
Challenges Ahead
Life’s WORC, like most human service provider agencies, is facing a difficult period as governments at all levels plan significant reductions in their levels of spending.
Peter Smergut is putting his faith in a strong, internal, values-based culture that Life’s WORC had tried to create through an elaborate and highly effective staff development and recognition system. The agency uses a variety of finely-tuned recruitment, evaluation and performance-based compensation practices in order to attract, retain and reward staff who demonstrate commitment to the agency’s mission and values.
The staff’s values, their commitment and their happiness in their jobs are all essential to effectively serving the individuals entrusted to the agency’s care, argues Smergut. “Our staff are so intimately involved with the people they serve – feeding them, cleaning them, helping them with the most personal aspects of their daily lives. If the staff are not happy, the people we serve can’t possibly be happy.”
So far, says Smergut, Life’s WORC has been very successful at treating its staff as well as it possibly can. The result, he explains, shows up in citation-free audits … and happy residents and program participants.
For more information visit www.lifesworc.org.
|
Comments