Jerusalem Post Magazine Weekend Edition – Jun 28, 2012
By JOSH HASTEN
When Jerusalemite Alon Chasid’s son was born via a difficult delivery six-and- a-half years ago, it looked like everything was going to be alright.
However, several days later, doctors revealed to the family that the baby had undergone severe trauma, including bleeding in the brain. Those complications would lead the infant to live a life nearly completely disabled, both mentally and physically.
Following a six-month hospital stint, the Chasids decided to transfer their son to the Jerusalem branch of ALEH, Israel’s largest network of residential facilities for children with severe physical and cognitive disabilities.
The Chasids, realizing they could not raise their child without full-time help, turned to ALEH, which has four “homes” throughout the country – and a fifth currently under construction – and provides 650 children with high-level medical and rehabilitative care. Since the organization provides its young population with care 24 hours a day, 365 days a year, they decided it was their best option.
Chasid says that “on one hand you want your child at home, but, on the other, you know it’s impossible since they need round-the-clock attention.
ALEH provides a solution where families can live with an internal peace of mind, knowing that their loved ones are getting the best care possible.”
Giving a tour of the Jerusalem branch of ALEH, the full-time home of Chasid’s son and 71 other physically and mentally disabled children, Rikki Frohlich, who has been the facility’s head nurse for the past six years and an employee of the organization for a decade, says that there are three distinct populations under the care of her vast multidisciplinary staff, which comprises doctors, nurses, therapists, social workers (who spend most of their time working with families), and aides who assist in the difficult task of feeding and bathing the children.
In the first category there are children who were born disabled, representing around 60 percent of the home’s population, most whom suffer from Cerebral Palsy. These children, Frohlich says, can live long lives despite their disabilities.
The second group consists of children born with a variety of genetic disorders, including Tay-Sachs, Canavan disease and Rett syndrome. Unfortunately, the life expectancy for these children is not very long. The third group consists of children who were born healthy but became disabled after an accident – typically a bad fall, drowning or choking. Included in this group are children who have been removed from their homes by social services as a result of severe parental abuse that rendered them permanently disabled and in need of full time care.
“Regardless of what category they fall into,” says Frohlich, “our top goal here is to give these children the best quality of life possible. We treat them like regular children.”
She points out that all of the upstairs bedrooms are totally empty, as it is midmorning and all the children are either downstairs attending the in-house special education school or receiving a variety of necessary treatments, which in some cases are part of the daily regimen necessary for living – akin to air, food and water for those of us in the general population.
“For each individual child here,” says Frohlich, “the definition of ‘quality of life’ is different, and we build their life programs accordingly. For some children, it’s simply assisting them to breathe, for others it’s a trip to the beach. Regardless of their level of functioning, we believe that there are ways to reach them and no matter how low-functioning a child might be, we believe they understand we’re here to help them.”
During our tour, it is at times difficult to walk in and out of the various classrooms and therapy sessions taking place and seeing small children, and even babies, who are dependent on advanced machinery to help them breathe, digest their food and even move their bodies – activities that an ordinary person might take for granted.
Frohlich admits that after her first week on the job, she wasn’t sure she could handle such an environment, but 10 years later she is still hard at work, fully committed to enhancing the lives of these children in need.
In addition to the children who live at the facilities full time, ALEH provides thousands of outpatient sessions to kids with milder disabilities who are able to live at home under the supervision of their parents.
Frohlich says that in the Jerusalem center, there are 30 children who live at home but attend the ALEH special education school and participate in various therapies or special activities every day and are thus in the building from around 8 a.m. to 5 p.m.
YEHUDA MARMORSTEIN has been the executive director of ALEH for the past 25 years, overseeing operations at all four branches – Jerusalem, Bnei Brak, Gedera and the Negev. He is now busy supervising the construction of the fifth branch – an additional 10,000-square-meter facility in Bnei Brak due to a long waiting list for residential care in that area.
He says that ALEH, which is celebrating its 30th year of service this year, was founded in 1982 by a group of parents in Bnei Brak who had children who were disabled from birth or became disabled as a result of severe accidents at home.
While the organization was founded with a “religious agenda, meaning we adhere to the standards of Shabbat, modesty and we are strictly kosher,” Marmorstein says that “we cater to the needs of all populations in need in this country, religious or non-religious, Jewish or even non-Jewish.”
He says that ALEH has grown tremendously over the years thanks to the good relationships the organization has developed with those that have supported their efforts – including the hospitals; various government ministries, specifically the Health Ministry and the Welfare and Social Services Ministry; and the parents themselves, especially a group of dedicated women volunteers who make up the ALEH Ladies’ Committee.
Susie Engel, an immigrant from Australia, has been one of the most active members of the Ladies’ Committee for over 20 years. She says that she began to volunteer with ALEH after learning of a horrible tragedy in which a toddler suffered severe brain damage after being trapped and drowning in a bucket of water in his home while his mother was washing the floor.
She, along with a group of 15 to 20 other women, organizes an annual gala in Jerusalem to benefit the organization.
Over the years there have been dinners, concerts and other special events with the proceeds earmarked toward helping the children of ALEH.
Marmorstein says he is grateful for the annual events and other activities organized by the Ladies’ Committee since, while government agencies fund 70% of ALEH’s budget, the remaining 30% is brought in through private donations.
Another dedicated volunteer who can be spotted roaming the classrooms and corridors of the Jerusalem facility putting a smile on the faces of ALEH children is Anchorage, Alaska resident Curtis Sparks. Sparks, who is a devout Christian and works with disabled adults in residential facilities in his community through an organization called Hope Community Resources, has been coming to Israel for one month every summer for the past seven years in order to spend time with the children of ALEH.
“These kids brighten my day,” he says.
“Working with the disabled, I have learned to see people for who they are, not the way they were made.”
Curtis says he sees himself as a “big brother” for the kids. He spends a few hours a day in the building, “helping with arts and crafts, and just hanging out with them.” He adds that “it is very rewarding to work with these kids and I am so thankful to have this opportunity.
“Also,” he says, “I always commend the staff for the beautiful and important work they do. They are the ones whose faces these kids see first thing in the morning and last thing at night, so that responsibility is so important.”
In addition to having a son living at ALEH, Chasid is the head of the ALEH- Jerusalem branch parents’ auxiliary.
“Our task as parents with children living here is to show our support for the faculty and give them the motivation they need to work with our children,” he says. The parents’ auxiliary hosts special events, such as barbecues, for the staff throughout the year and also gives them gifts during the holidays.
“I don’t have the ability to give my child what he needs,” he says. “But I can help the staffers give their best to my child.” He concludes by adding, “I couldn’t imagine what life would be like without this place.”