By Joanna Kadish, other
Elie Seidel, a stocky woman in her late 30s with a face that looks like it belongs on a teenager, lifted up her shirt to display a Seahawks T-shirt. She is wearing a Mariners baseball cap. “I love the Seahawks,” she said. “I love the Huskies. Do you, Tony?” She shoots this question at one of the caretakers at Tikvah House, who responds, “I don’t follow college football.” A discussion ensues between various residents of this group home for Jewish disabled adults, some of whom follow sports avidly, although one of the caretakers jokes privately to a visitor that they often confuse the winning and losing teams.
Seidel is lively, kidding with other residents. One man in his early 30s who suffers from Down’s Syndrome and is diabetic, laughs at something she says. Tara Sullivan-McMahon, supervising nurse and house manager at Tikvah House, which houses six adults with developmental disabilities, recalled a few times when this man was found unconscious with blood sugar at dangerously low levels. “He can administer insulin himself,” she said, “but he sometimes forgets. We have to watch the blood sugar levels closely.”
Marilyn Siegel, 51, often has seizures, a remnant from a childhood illness, so she has to be watched constantly, wearing a helmet when she walks around the house to prevent further injury to herself.
There are only three Jewish homes for the disabled on the West Coast and the Seattle Association for Jewish Disabled runs two of them, including Shalom House, which handles six individuals who have suffered brain trauma such as schizophrenia. “For many families, this is the only viable option,” said Sullivan-McMahon. “They look to us to provide the quality of care that they can’t afford on their own. We find activities for them, healthy choices, and we help them learn their limits. The people here have a lot of physical issues. They can’t walk across the street by themselves and some of them can’t use knives — they might lop off a finger or two. Our goal is to provide a place for them to flourish.”
But for these people, disability does not interfere with their religious duties. Seidel is looking forward to celebrating Rosh Hoshanah at Tikvah House, which she says is a special time for her. Then she says next she looks forward to January when her mother, sister and nieces plan to visit from the East Coast. The homes provide “a warm nurturing Jewish environment,” said Don Armstrong, director of the Seattle Association for Jewish Disabled, a division of Jewish Family Service. “Residents observe Shabbos, all the holidays, and we provide transportation to synagogue as well as a visiting rabbi.”
One of the difficult aspects of being disabled is the isolation that many feel. “Here we have people who don’t reason as adults but have the same needs and wants as adults,” said Sullivan-McMahon. One of the women expressed a desire to have children, but she can’t take care of herself. Others have said they would like to have families too, but they can’t in the usual sense. All but one of the six residents at Tikvah House work part time and show great pride in their achievement.
Siegel works at a pre-vocation program four days a week from 10 a.m. to 2 p.m., along with several other residents, making paper out of recyclable material, stuffing and stamping envelopes and other tasks. “They are so excited to be working,” said Sullivan-McMahon. “They know what they need to do.” The staff lays out the clothes and walks them through washing and getting dressed, breakfast and then some of them get driven to jobs while others take public transportation.
The homes were started about 10 years ago by several parents of disabled children who got together at the house of the Siegels. Jewish Family Service was brought in to help and the houses were established. “My wife started meetings here in our house,” said George Siegel. “It’s a big undertaking, one family can’t sustain a handicapped person. Who can afford round the clock care?” Now the Siegels can take trips and are assured their daughter is in good hands.
Sullivan-McMahon worked as a residence counselor for the group homes for five and a half years before receiving her nursing degree. “It’s nice to be involved in such an intimate way in peoples’ lives,” said Sullivan-McMahon. “I feel like I’m making a real difference.” SAJD hired her last year to work as a supervising nurse to comply with changes in state regulations. To meet the new requirements, residents of a licensed adult family home can’t receive personal care services such as assisting with bathing or medication without the supervision of a registered nurse. All 16 part- and full-time staff had to take a course in the fundamentals of nursing and are required to update their education yearly, all of which adds to the cost of the program.
The average cost of care is $3,750 a month per individual, about 50 percent is covered through an endowment fund earmarked for the homes, plus monies provided by the families of residents and government funds such as Social Security. The other half comes from the annual operating budget of Jewish Family Service and includes the annual allocation from the Jewish Federation of Greater Seattle. In addition, funds from the Federation Community Campaign have been specifically earmarked for the past two years to cover the majority of the expense of the supervising nurse. “The vast majority of the disabled can live without 24-hour care,” said Armstrong, “but for a few, this is really the only way.”
“Our waiting list for intensive care is small but we do have a huge list requiring something less intensive,” said Armstrong who calculates that there are about 3,000 Jews in the Seattle area with disabilities of varying degrees. “We’re exploring other options to see if there is something we can do for the people who fall into that gray area.”
Sullivan-McMahon works weekends as a surgical nurse for the University of Washington Medical Center but she says her real passion is working with the disabled. “On the surgical floor we never know what’s going on in people’s lives — but here we can work on wellness issues, promoting hope in populations that don’t always have hope.”
(Joanna Kadish recently traveled with the Jewish Federation on the Summer Family Mission to Israel.)