- Introduction
- History
- The House: Connections to Homsite, a Community Housing Agency
- Creating Supports: A Collaborative Effort
- Conclusion
The women are now living in a place that’s totally theirs, that they don’t ever have to leave if they don’t want… The other thing that is really important is that so many different people have been a part of it, so many different agencies, not just DD agencies. The cooperative effort that it involves is really kind of amazing. And nobody could have done it without the other one; and we all worked together to make it happen.
In the past few years, the Syracuse Developmental Services Office (DSO), in Syracuse, New York, has been moving toward closure of its institution, the Syracuse Developmental Center (SDC). In this process, administrators were determined not to hurriedly place everyone from the institution into community-based group homes and ICFs/MR. They realized that, in order to close SDC within a reasonable time frame, many people would in fact have to move into group settings, albeit mostly smaller than in the past. In addition, however, they planned to encourage and support staff to design individualized settings and supports for as many people as possible.
Around the Spring of 1993, the Director of the Syracuse DSO challenged his staff members to begin thinking about people who they might assist to live in more individualized settings. To this end, five “interim case management” positions were created to provide staff to work more intensively on this. One of the people who was hired for this role recalls:
And what they were looking for was five people who could challenge the Center (SDC) to think beyond traditional practices. And what they wanted us to do was assist with the closure of the DC and make placements with those folks as individual as possible, and sort of give us and allow us the time to really investigate what that might be. And that kind of evolved not just to people at the Center, but to people in residential homes and ICFs and stuff.
As a result of the efforts of these interim case managers, as well as many other staff within the DSO, a variety of creative, individualized supports have been developed. As Kristen, one of these case managers, described it:
The reality of all of this is that it takes a lot of time, and it’s a lot of work, and a lot of connections have to be made. And, it’s not something you can do and carry a case load of 45 people that you have certain responsibility and requirements to perform. You can’t visit 20 family care homes in a month and still spend 20 hours, 30 hours devoted to trying to get this to work.
This effort necessitated the collaboration of DSO staff with many other human service and community organizations. The paper describes one of the situations that resulted from these efforts; it is the story of Sarah and Wendy’s move from a community residence to their own home.
The story of Sarah and Wendy actually begins before their residency in the group home. As adults, they were living in Skaneateles, a small community outside of Syracuse, with their mother, Evelyn. Evelyn has many needs herself and was unable to maintain the household with her daughters without support. This resulted in the involvement of social services agencies, who ended up breaking apart this household. At this time, Wendy and Sarah were placed in SDC, where they lived for several years. Then, when the state opened a community residence in Skaneateles, Wendy and Sarah moved there.
With the inception of the interim case management role, these employees began thinking about people they knew of who might be interested in moving. One of these case managers, Monica, spoke with staff at the Skaneateles group home, who themselves had been thinking about other possible living arrangements for Sarah and Wendy Robertson. The case manager began meeting regularly with the Robertson sisters, their mother Evelyn, and staff at the group home to formulate clearer ideas of what they wanted and what the DSO could do. As Kristen, who later took over Monica’s role as case manager, reflected:
They were thinking at that point, you know, we’re not sure what we’re talking about; we’re not sure if we’re talking about creating an IRA for them, because at that point they were still thinking about how to provide the staff assistance that they needed. Whether to rent, to buy, to build. In the beginning, the thought of building was kind of overwhelming, sounded very expensive. Even buying at that point was something I think they hadn’t much considered.
It was decided that they would pursue the search for housing in Auburn, since Sarah and Wendy have a number of family members in that area.
The House: Connections to Homsite, a Community Housing Agency
The director of community services for the Cayuga County region of the DSO was aware that the Robertson’s were looking for housing possibilities in the Auburn area. At the same time, he was aware of a community housing agency, Homsite, and had collaborated with them in the past on home modification projects. He suggested to Monica that she contact them.
Homsite, which has been in Auburn for over 20 years, operates a wide variety of housing programs including Affordable Housing programs, Small Cities Community Development Block Grant (CDBG) programs, Framers’ Home, First Time Home Buyer program, Single Family Housing program, Section 8, and others. The agency is also involved in housing modifications/rehabilitation and weatherization, and it offers services such as mortgage default counseling, reverse mortgages, and the like. Many of these federal and state housing programs target people with special needs (e.g., senior citizens, people with disabilities, etc.) as a priority population to assist. Yet, very little use of these programs has been made to enable home ownership for people with developmental disabilities. As a staff member at Homsite explained:
It falls back to the supportive service agencies. It’s going to take the initiative of the service agencies getting a hold of the housing agencies and saying, hey look, this is what we’ve got, this is what we want.
Accompanied by their case manager, the Robertsons came in to Homsite to meet and discuss the different options available. They decided to pursue home ownership through Homsite’s Single Family Housing program. Although Homsite had previously done modifications to homes for accessibility for people with developmental disabilities, the agency had never before assisted someone with severe disabilities to own his or her own home. They were not sure how it would work, but were willing to give it a try.
It’s still a concern. It’s something that Homsite hasn’t done to that extent before. We’ve provided handicapped housing, we’ve built ramps for people before, but as far as actually having, I would consider them quite severely handicapped, them as home owners. But we were certainly willing to give it a try.
Their concern was minimalized based on their prior connections with people in the regional office of the DSO, as well as their knowledge that local service agencies had adequately supported people with disabilities in other settings such as their own apartments.
Homsite had 15 houses under construction; if the Robertsons qualified for the purchase of one, some modifications could be made during the construction process. Applications are prioritized in the order in which they are received. The Robertsons went through the same application process that anyone else would to obtain a house through Homsite. Basically, this involved the need to qualify for a mortgage.
The initial cost of the house was $69,000. With a bulk sum of money obtained from the New York State Affordable Housing program, Homsite was able to write down the cost of each of the 15 houses by $19,000; and Community Development Block Grant funds enabled them to reduce the cost of each by another $13,000. Thus, the total write down was $32,000, resulting in a sale price of $37,000.
The Deputy Director of the Syracuse DSO, along with other staff, strategized about the best way to approach the bank. They utilized advice that they had received from Jay Klein, of the National Home of Your Own project based in New Hampshire. They decided not to speak to the bank from a “this is the right thing to do,” or a human service perspective. Instead, they opted to pursue qualification on the merits of the Robertson’s financial situation. This was based on three components:
- Demonstrating to the bank that they had a downpayment. For Sarah and Wendy, this consisted of the write-downs from the housing programs, constituting a considerable downpayment.
- Demonstrating to the bank that they pay their bills. A letter of verification from the state Office of Mental Retardation and Developmental Disabilities confirmed that Sarah and Wendy had consistently paid room and board in the Skaneateles community residence using their SSI income.
- Demonstrating to the bank that they had a source of income sufficient to pay their mortgage and other financial obligations. As Wendy’s and Sarah’s representative payee under the SSI program, the Director of the DSO confirmed that, being categorically eligible for SSI, Wendy and Sarah would continue indefinitely to receive this money. In this respect, they could be considered to be less of a financial risk than most people in today’s economic climate.
Since Homsite does a lot of business with Cayuga Savings Bank, agency staff suggested that Sarah and Wendy approach this bank for the mortgage. The bank was very receptive to consideration of the mortgage application. As the case manager reflected:
The people at the bank were very much saying, we want this to work, we don’t want you to feel like we’re going to stand in your way. Even though this is a little different, we’ll try, we’ll tell you what we need, and we’ll try and make this successful.
During the course of reviewing the mortgage application, only one major concern was raised by the bank. This was the issue of competency; whether or not Wendy and Sarah were competent to enter into a contract such as this. Staff at the DSO consulted with Legal Services of Central New York. A representative of Legal Services explained to the bank’s attorney that, in New York State and many other states, people are presumed to be competent unless they are proven in court to be incompetent. This seem to resolve the issue for the bank, and shortly thereafter Sarah and Wendy were approved for their mortgage.
Once the mortgage was approved, some adaptations were made to the house, which was still under construction. For example, since Sarah walks with canes and Wendy uses a wheelchair, it was requested that the passageways between some of the rooms in the house be widened. These changes were made with the use of a home modifications contract through the Medicaid waiver. At the same time, in the process of grading the property, the contractor spent a lot of time consulting back and forth with the case manager and staff from the group home in order to create the best possible access to the house.
Sarah and Wendy closed on their new home on August 4, 1994. As the director of community services in Cayuga County reflected: “Buying the house and getting in the door is like closing one chapter and opening another one.” The next section of this paper explores part of another chapter in the story of Wendy and Sarah—that is, creating the supports that enable them to live in their home.
Creating Supports: A Collaborative Effort
Planning for and creating the supports that enabled Wendy and Sarah to pursue home ownership and that will enable them to live in this home entailed a significant degree of interagency collaboration and cooperation. The case manager shared her thoughts about this process:
The other thing that I think is really important is that so many different people have been a part of it, so many different agencies, not just DD agencies. The cooperative effort that it involves is really kind of amazing. And nobody could have done it without the other one; and we all worked together to make it happen.
In planning for the purchase of their new home and the support they would need to live there, Sarah and Wendy decided to invite their mother, Evelyn, to move in with them. This both decreased the need for more paid staff and reunited a family whom the service system had split apart. It will entail ongoing support for Sarah and Wendy, as well as for Evelyn.
For Sarah and Wendy, a first step was assisting them to choose who they wanted to provide them case management and residential supports. The case manager reviewed with them various options of different agencies that could provide support. She had an interest in continuing to be involved in this situation that she had worked hard to create. Yet, she tried to stand back from that, as much as possible. As she described it:
It would have been extremely easy to say to them, you really should pick this agency because… and they would have said OK. And, we tried really hard to be aware of that, to bring other agencies into the meetings.
Sarah and Wendy opted to keep Kristen as their case manager. She has let them know that they can always, at a later time, change this decision if they desire.
For their residential supports, Sarah and Wendy chose the Comprehensive Technology Center (CTC) in Auburn. They already were attending the CTC workshop during the day, and were so familiar with staff and the agency as a whole. In addition, Evelyn decided that she wanted a case manager and parent aide for herself, and also chose CTC to provide this. A primary area that she wants assistance with is how to support her adult daughters, but at the same time back off from overparenting.
Overall, funding to support Wendy and Sarah in this house comes from a variety of sources. Their SSI covers most of their basic living expenses. The Medicaid waiver pays for the residential habilitation services, case management, and home modifications. As individualized supports services (ISS) contract from the state provided $9,500 per person for start-up expenses and contributes a $200 per month subsidy to cover the household expenses not covered by their SSI income. Finally, Evelyn has agreed to be in the house in order to provide supports if needed from approximately 8:00 pm until 6:00 am. In addition, she contributes approximately $120 per month toward household expenses.
When the supports were first being set up, there was need for frequent meetings between Sarah, Wendy, Evelyn, Kristen, and Brenda (senior vice president of residential services at CTC). One of the tasks was to hire the primary person who would provide in-home support. Brenda reflected:
I wanted someone that would work well with Sarah and Wendy, that would be comfortable with them, and they comfortable with the staff person. And I felt that that staff person was going to be the very key to the whole thing, the success of the whole thing.
Martha Thomas, who had previously worked in CTC’s 12-bed group home and then gone on maternity leave, was interested in coming back to work in this position. After numerous visits with Wendy and Sarah, and meetings with Brenda and Kristen, Wendy and Sarah made the decision that Martha should be hired.
Martha’s hours are from 8:00 am to 10:00 am, and 2:00 pm to 8:00 pm, Monday through Friday. A primary relief staff person works on weekday mornings from 6:00 am to 8:00 am, and Saturdays and Sundays from 10:00 am to 8:00 pm. Other relief staff are available, when needed. The hours of support can be increased or decreased, depending on Wendy, Sarah, or Evelyn’s needs. For instance, during one month, staff stayed later a few evenings at Evelyn’s request for extra assistance.
For the staff, working in someone’s own home requires adjusting to roles and relationships that are different from working in an agency-owned facility. Kristen described one aspect of the process of change in one staff member:
And, I said, in a meeting, you know, when the phone rings, don’t jump up and answer the phone, it’s not your phone. It’s also not a residential phone; it’s not your responsibility. So, if Wendy or Sarah are in any way available to that phone, hand them the phone, have them say “hello.” I said, “How do you know it’s not for them” She just hadn’t thought about it. Now it’s in her awareness. And, so now, also, when somebody knocks on the door, instead of saying “Come in,” she’ll say, “Wendy, go get the door, there’s a visitor. Do you want this person to come in or not?”
Overall, Martha is very glad that she made the switch from working in a community residence to Sarah and Wendy’s home. She reflected on some of the ways that it is different for her:
With working in the group home for 6 years, there’s a lot of regulations and rules, and things need to be done this way… And myself, along with everybody else, thought I was going to have a problem adjusting, adapting to a place where you don’t have the regulations and the rules, and the state doesn’t mandate that you do this and you do that. It’s just so laid back. I really enjoy working here. I’ve even said, you could double my salary, I would never go back to the group home.
In adjusting to this new job, Martha feels she has gotten a lot of support from both Brenda and Kristen.
The move to this new home was a significant step in assisting Sarah and Wendy to become part of the Auburn community. However, their primary social networks consist still of family members and others with disabilities. Staff are involved in supporting them to take part in numerous community activities and events. They realize that significant effort remains to be done in assisting them to broaden their friendships and social networks to neighbors and other community members without disabilities.
Everyone who has spent time with Sarah and Wendy since their move feels that both women like the change a lot. As Kristen put it:
The women are now living in a place that is totally theirs, that they don’t ever have to leave if they don’t want. And that hasn’t quite made an impression on them yet, but it’s getting there.
As time goes by, they are each taking on new responsibilities in the household, at their own initiative, and are gradually learning more about what it really means to have control and ownership of their own home.
There were a number of key factors which contributed to the successful process leading to home ownership for Sarah and Wendy. These include the following:
The cooperation and collaboration among a variety of human service and community agencies. Important connections were made with the housing agency in order to explore options for creating affordable housing that are available to community members, but that they have been rarely utilized by community members who have developmental disabilities. In addition, it was crucial that all human services and community agencies work together through all phases of the process.
The willingness of the housing agency, the bank, and insurance agents to give this application the same consideration they would others. This was facilitated by the approach taken to them by human service agency staff, assisting the women to present themselves as would others seeking a mortgage in the community.
The flexibility of the DSO in creating and supporting new case management strategies. Typical case loads are generally too high to allow the time and effort needed to develop individualized supports such as this. Thus, it was the DSO’s flexibility with case management loads that made possible the development of individualized supports and home ownership for Sarah and Wendy.
The willingness of agencies involved to explore home ownership for people with severe disabilities. In the past, many agencies have only explored options such as this for people considered to have mild disabilities. During the course of planning for this move, some staff in the agencies have collaborated to help make this work for Sarah and Wendy. As such it demonstrates to agency staff, parents, and other community members the possibilities of individualized supports for others who also have severe disabilities.
Note: All names of people in this report of pseudonyms.
Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education for the Research and Training Center on Community Integration through Cooperative Agreement H133B00003-90 awarded to the Center on Human Policy at Syracuse University. The opinions expressed herein are solely those of the author and no endorsement by the U.S. Department of Education should be inferred.