By Joshua Rosenstein, other
Twelve and a half years after Tikvah House opened, the Seattle Association for the Jewish Disabled (SAJD) will be closing its group home for adults with developmental disabilities. In its place the SAJD is launching a new program called the Independent Living Project (ILP) in which individuals from both Tikvah House and SAJD’s group home for adults with mental disabilities (Shalom House) will live independently in studio and one-bedroom apartments. Most of the remaining residents of both houses will be consolidated into Shalom House.
Shalom House opened in 1986. Tikvah House opened in 1990. They were designed to offer transitional living for the Seattle Jewish community’s mentally and developmentally disabled, leading to greater independence. The houses offered 24-hour care and nursing staff with an RN on the premises. Don Armstrong, director of the SAJD, says that when the houses were conceived, the idea was to provide a home for people with lots of skills who needed minimal support. The residents did their own laundry, cooked their own meals and generally functioned on their own.
The original vision of the houses began to falter as state licensure changed, Armstrong explains. The licensure for adult family homes, the lowest level of licensure needed to operate an adult group home, has been changing. The trend has been toward providing services for people with a lot of needs, and the licensure reflects that.
Now, according to Armstrong, staff cannot even apply eye-drops or topical lotion without direction from an R.N. This drives up costs significantly; the cost for a resident in Tikvah House for one month is $4,000, while due to a lower staff-to-resident ratio at Shalom House, the cost is $3,750 per resident per month. In addition to driving up the costs, however, the licensure was forcing Jewish Family Service (JFS) to provide services that the residents did not require.
Back in 1999, JFS convened a committee made up of some 20 individuals in the Jewish community from varied backgrounds in order to evaluate SAJD programs. Herb Stusser, a layperson involved in the SAJD since the early 1980s and the father of a disabled son, chaired the committee. While the initial impetus for the committee was funding and licensure issues, they quickly realized that the issue at stake was the effectiveness of the programs. Stusser and the committee looked at data on other cities’ programs, studied the demographics of the local community and analyzed the community’s needs. The committee found that the majority of disabled people want to live as independently as possible and that was an option that JFS was not providing. The result of this work is the new Independent Living Project to be implemented this summer. While the ILP program will definitely help reduce costs, it will not eliminate them.
“The ILP goes back to our original mission,” says Armstrong, “to help people with a variety of disabilities live normal lives with as much autonomy and dignity as possible.”
The residents that are about to embark on the ILP span the age group of 30s to 50s. They have been living in the Tikvah/Shalom houses for anywhere from a few months to 15 years. One client has been living in Tikvah House’s transitional studio apartment for the past four years. Once they go out on the ILP, SAJD’s clients will move to several different locations in Seattle’s First Hill neighborhood. Four of them will be in the same building, one client will live a block away and one will live a half mile away.
JSF staff will be on site in the buildings from 7 a.m. until about 10 p.m. The staff will provide assistance as needed and help the clients with leisure and social activities. This is one of the differences involved in the new ILP: As independent clients they will have neither 24-hour supervision nor an R.N., on site. They will, however, be close to many Jewish community locations including Temple De Hirsch Sinai, The Summit at First Hill, Council House and JFS’s Jessie Danz Building.
Armstrong characterizes the atmosphere in the Tikvah and Shalom houses as being a mix between a family feeling and a roommate situation. He says, as in most families, the participants in the ILP are ready to stretch their wings and are looking forward to having more privacy and independence, although they will continue to share leisure activities like Shabbat and holiday observances. While Armstrong is enthusiastic about the ILP, he recognizes that there is certainly some ambivalence involved. “On the part of both the clients and their families we are seeing anticipation, excitement and…some nervousness,” says Armstrong. “All the families have been working with the JFS, they are committed to seeing their children enjoy the highest quality of life possible, and they recognize that that is what we are trying to achieve.”
Herb Stusser, chair of the committee that designed the ILP, understands that while the residents and staff are excited about the new ILP, some of the residents’ families are somewhat apprehensive. “Change is intimidating,” says Stusser, “especially when it deals with the lives of people who need support. Their families are understandably anxious. I have every expectation, based on significant groundwork, research and prep work, that the ILP will be a positive change.”
Most of the families involved agree with Robert Piha, whose brother, Jerry, is embarking on the ILP. Piha says he is hopeful about the opportunity that the ILP may afford his brother. He is thankful for Tikvah House, which has been such a good part of his brother’s life for so many years. He is nervous, but optimistic.
As with all changes, there will be some conflict involved. Linda Blustein has a brother in his 50s who will not be going on the ILP. He will be moving to a different adult group home outside the Jewish community. Blustein says she is saddened at the closing of Tikvah House and thankful for the 10 years her brother lived in Shalom House. “For 10 years he lived under the care of staff who had a solid understanding of the challenges inherent in the care and support of mentally disabled people. They kept him healthy both emotionally and physically and he enjoyed the comfort and continuity of life at Shalom House,” she says.
While living at Shalom House, Blustein says her brother especially enjoyed the social outings and the annual picnic. Blustein is regretful that her brother will be moving and wishes that JFS could meet her brother’s needs. On the other hand, she holds no resentment. “I think they [JFS] are doing the best they can,” Blustein says. “I am not sure how they made the decision who went where, but I am truly grateful for the past 10 years, especially to the staff of Shalom House, who were so caring and supportive. I really appreciate the JFS and how they strive to meet the varied needs of diverse people in the community.”
Mildred Piha, Jerry’s mother, says it was with an element of shock that she received a letter from a fellow parent residing in California to the effect that on a recent visit to Seattle she had heard that Tikvah House was closing. Although Armstrong says parents were represented on Stusser’s committee, Piha did not feel that parents were given an adequate voice. She also felt that the communication process could have been clearer. Nonetheless, she is trying to be positive about the ILP. “Jerry is very much afraid of being alone,” she says of her son. Even when he is at her house, he has to have a neighbor with him. “But I guess he has been talking to a lot of people and he seems pretty excited [about the ILP],” she added. Her son will be sharing his new apartment with a roommate from Tikvah House. “It would be good for everyone if it works out,” Piha says. “We’re going to give it a chance and take it from there.”
“The goal of SAJD is to enable every Jewish man, woman and child to receive the care and support they need to live with the most dignity possible,” says Armstrong. “The ILP is a tremendous step forward in that direction. It is not, however, the final step. We recognize that there are community members out there with disabilities not benefiting from our services, especially those with severe and profound disabilities requiring one-on-one care that we simply can’t provide yet. Hopefully there will come a day when we can provide services for every member of the community who comes to us with a need.”