Abstract

In-person semi-structured interviews were conducted with 7 homeowners selected by 6 state homeownership programs as representing good examples of homeownership by individuals with developmental disabilities. Recurring themes were found in the choice of a home, advantages and disadvantages of homeownership, handling problems, community relationships, finances, supports, future plans, and homeownership advice. Although the process of purchasing the home was described as lengthy and difficult and ownership brought unexpected problems, these were outweighed by the financial, social, and psychological benefits of owning one's own home. A variety of external factors, including some undue control of the process by service providers and family members, appeared to add to the difficulties homeowners faced. Implications for improvements in homeownership assistance programs are discussed.

Homeownership has long been regarded as a central component of the “American dream.” The advantages that have been associated with owning one's own home include (a) a greater degree of choice and control (Galbraith, 2001; O'Brien, 1994), (b) more housing and neighborhood stability (Everson & Wilson, 2000), (c) an improved sense of community attachment (Cuba & Hummon, 1993; Mesch & Manor, 1998), (d) greater economic security and opportunity to accumulate equity (Page-Adams & Sherraden, 1997; Wilson & Everson, 2000), (e) enhanced community status (Everson & Wilson, 2000), and (f) increased social and community involvement (Howe, Horner, & Newton, 1998; Rohe & Basalo, 1997).

Control over one's own residence has been increasingly recognized as an important consideration for advancing the choice and control of adults with developmental disabilities over their own lives (McCarthy, 2000). Restricted opportunities for individuals with disabilities to make decisions or to exercise choice in matters that directly affect daily life (Kishi, Teelucksingh, Zollers, Park-Lee, & Meyer, 1998) reflect, in part, the restrictive environments in which people have historically been placed (Duvdevany, Ben-Zur, & Ambar, 2002). Greater control over one's living environment is recognized as a critical feature of self-determination for adults with developmental disabilities (Stancliffe, Abery, & Smith, 2000) and has been one of the motivating forces behind the movements towards self-directed funding (Turnbull & Turnbull, 2001) and personalized supports (Blumberg, Ferguson, & Ferguson, 2000).

Several initiatives have demonstrated the viability of homeownership for individuals with developmental disabilities. One of the most notable example is that an estimated 900 individuals were assisted in purchasing their own homes through state coalitions affiliated with the National Home of Your Own Alliance between 1994 and 1998 (Klein & Nelson, 2000). Feinstein, Levine, Lemanowicz, Klein, and Hagner (in press) conducted a study of 129 successful, unsuccessful, and pending homeowners in 9 of these states and investigated the impact of homeownership on quality of life in the areas of choice, control, inclusion, independence, relationships, and participation in the local economy. Homeowners reported significantly higher levels of choice, control, and participation in the local economy than did nonhomeowners, but they were not significantly different in their levels of community activity and social relationships.

To obtain a complete picture of the impact of homeownership on quality of life, however, it is also important to look in detail at the subjective meanings of homeownership from the point of view of homeowners with developmental disabilities. Home has a variety of personal meanings for each person (Cuba & Hummon, 1993), embedded in everyday experiences and surroundings (Feldman, 1996). Annison (2000) noted that although the word home has been used to describe a variety of residential options for individuals with developmental disabilities, these options have not necessarily been experienced by the residents as homes, and many have been anything but homelike.

O'Brien (1994) viewed homeownership as having three dimensions: (a) individuals experience a sense of place, inhabiting the residence in a comfortable and personalized way; (b) individuals control the home and the support they need to live there; and (c) individuals feel secure and stable in their residence. He cautioned against two particular tendencies to be avoided in the pursuit of homeownership. The first is a tendency to “dump” people into substandard dwellings or neighborhoods, and the second is a tendency to continue traditional agency-controlled practices while merely relabeling residences as consumer-owned homes.

In anecdotal reports Blumberg et al., (2000), Hepp and Soper (2000), and Stocke (1998) have described the experiences of individual homeowners in positive terms, but there has been little systematic investigation of how such individuals feel about pursuing homeownership or their experiences in purchasing and owning their homes. Using a focus group methodology, Everson and Wilson (2000) explored the perspectives of participants in one state homeownership program. They found that homeowners with disabilities were highly satisfied with their homes, their neighborhoods, and their status as homeowners. The time and cost involved in home maintenance and repairs was a disadvantage they perceived as a necessary part of an overall positive arrangement.

Our purpose in the present study was to explore the meaning of homeownership for successful homeowners across several states through in-depth interviews and visits to individuals in their homes. Conducting interviews in individuals' own “turf” allowed opportunities for interviewees to use tours of their homes and yards and show items within their homes that allowed them to expand upon and illustrate their stories, as well as opportunities for interviewers to observe a small sample of interactions between homeowners and housemates, support providers, and community members in their natural settings.

Method

The first two authors interviewed 7 homeowners in 6 states; 1 interview was with a couple who owned their home and were interviewed together. All homeowners were individuals with developmental disabilities who had acquired their homes with assistance from the Home of Your Own project in their state. A purposeful sampling process (LeCompte & Preissle, 1993) was used to identify participants. Homeownership assistance project offices in states that were geographically dispersed within the United States were contacted: Arkansas, Connecticut, Missouri, Pennsylvania, Texas, and New Hampshire. Two of these were affiliated with state Independent Living Centers and 1, with a state Developmental Disabilities Council; 1 was a state Housing Finance Authority and 2, independent organizations. Coordinators of each program were asked for assistance in identifying an individual they considered to be a good example of homeownership success who was interested in a visit and interview. Each individual nominated was contacted and consented to the site visit.

The purposeful identification of positive examples is a sampling strategy within the tradition of what Bogdan and Taylor (1990) called “optimistic research.” Selecting particularly positive examples helps bring the details of a topic of interest, such as the experience of homeownership, into sharper focus and helps sort out a wealth of information useful for guiding service providers and advocates in their efforts to replicate or extend what has been accomplished in these successful situations.

The interviewees included 3 women and 4 men, ranging in age from 32 to 61 years, with an average age of 45. The length of time of homeownership varied from 10 months to 7 years. Demographic and home information for the interviewees is summarized in Table 1.

Table 1

Homeowner Interviewees

Homeowner Interviewees
Homeowner Interviewees

Interviews were conducted in-person in the interviewee's home, with the exception of one interview that took place in two parts, first at a restaurant near the individual's job over dinner, followed by a visit to the home. The first 2 interviews were conducted by both interviewers together. This allowed the interviewers to meet afterwards and discuss and compare their observations to ensure that their understanding of responses and overall impressions of the visit were consistent. The remaining interviews were conducted by one interviewer.

A list of semi-structured questions was developed for the interviews, based on our review of homeownership literature. Topics included the choice of a home, advantages and disadvantages of ownership, dealing with problems, community relationships, finances, supports, future plans, and homeownership advice. An informal, conversational style was maintained, and interviewees were encouraged to include any additional topics.

The interviews were audiotaped and transcribed, with the exception of the restaurant portion of one interview, where background noise prevented recording, so the interview was recorded by means of written notes. Site visits also included a tour of each homeowner's house and yard, and observational impressions from these tours were included as fieldnotes and added to the interview transcriptions.

Support persons were present for 4 of the interviews: a homeownership program manager, a service coordinator, a mother/housemate, and a live-in support provider. In 2 of these situations, the support person added comments when asked by the homeowner or provided supplemental clarifying information following the individual's answer. In 2 other interviews, the support person volunteered to answer several of the questions posed to the individual, with the apparent acquiescence of the individual.

The transcribed data were content-analyzed using inductive techniques (Bogdan & Biklen, 1992). The full set of notes and transcriptions was reviewed by the 2 interviewers and a third investigator, who each developed an independent list of recurring themes for each main topic across all interviews. Discussion among the three investigators refined these lists into a single set of study findings.

Findings

All 7 individuals were homeowners, with some variations on the type of ownership. Anthony, Roberta, Charles, and Samuel owned private homes, Jordan and Kathleen owned a condominium together, and Marilyn's home was owned by a housing cooperative of which she was a member. Findings about the meaning of homeownership for these individuals are presented in relation to each of the major interview topic areas.

Choosing and Purchasing a Home

For each interviewee, their major reason for pursuing homeownership was an interest in having more choice and control in their lives. This interest was not an abstraction; it expressed itself in relation to particular life areas of primary importance for each individual.

Charles, for example, was primarily interested in living in a place where he was not dependent on a landlord for making repairs. In the past he had experienced delays, and when he saw a problem, he wanted it taken care of quickly. Stephen and Marilyn each primarily wanted the long-term security in their residence that ownership provided. Roberta wanted a quiet location with room for a garden. Other personal interests and needs that informed participants' interest in homeownership and their selection of a particular home included (a) close proximity to work or volunteering opportunities, (b) more space, (c) a safer neighborhood, and (d) the opportunity for pet ownership.

All of the participants reported that buying their home had been a lengthy and arduous process. As Charles noted:

For me, it was pretty hard to go through the process. The waiting. There were times you'd get impatient, and you'd just have to put up with it. The waiting. Because they had to check your credit, see if they accepted you, and all that.

Homeownership programs and services were perceived as helpful in assisting the interviewees to navigate through the process of purchasing their homes. For example, 2 interviewees mentioned that they had benefited from homeownership preparation classes sponsored by their state program.

During visits to their homes, all of the homeowners pointed out specific features that reflected their individual preferences and lifestyles. For example, 3 interviewees had dogs, and 1 had a pair of tropical birds. Anthony was proud of the new barbeque grill on his back deck and explained that he enjoyed cooking outdoors whenever he could. Marilyn had converted one room of her home to serve as a craft room, with several projects in various stages of completion.

All but one homeowner reported that they had had to make compromises in relation to their initial expectations and that some external factors influenced the final choice of a home. For Anthony, Jordan, and Kathleen, and Charles, the state homeownership program had predetermined the home location to a large extent by selecting the neighborhood for project activities or by actually building the homes on a particular street. For Stephen, his mother, who also lived in the home, had played a major role in selecting the home. Roberta's live-in caregiver urged her to consider a home with enough property for a large garden, something of interest to the caregiver, and this restricted the selection of homes available to Roberta.

Advantages and Disadvantages of Ownership

All of the interviewees preferred homeownership to their previous living arrangement. The feeling of independence and self-determination that came from having a home far outweighed any disadvantages. Anthony expressed this point as follows: “With my own place, nobody can tell me what to do. I can stay up late if I want. I'm responsible to take care of me, and nobody else.” Stephen elaborated on how homeownership allowed full expression to his convictions about personal responsibility.

I like having my own place and having the say about who comes in. And I like having responsibility for my own decisions. I feel like it's my responsibility to make decisions for the house. There are people out there who are going to tell you “This is the right thing to do,” but you are the one who has to decide for yourself.

Personal control of one's living space was a particularly important aspect of homeownership. For example, Jordan explained how he and Kathleen had redesigned their bathroom exactly the way they wanted it. A related aspect of ownership was the feeling of enhanced equality and social status afforded the participants. Anthony related a conversation he had had with his sister and his cousin shortly after moving in to his home: “My sister and my cousin were surprised when they first found out I had a home. They asked me ‘How can you afford it?’ I asked them ‘Well, you've got a house too. How do you afford it?’”

Ironically, the biggest advantage of homeownership was also its biggest disadvantage. As Jordan stated, “It is a big responsibility. You have to take care of everything yourself. It's not like you have someone else who will take care of it, like when you rent.”

Careful budgeting and responsible bill-paying were ongoing issues, and difficulties staying within a strict budget were mentioned in every interview. As Anthony put it, “All my money seems to go right down a hole.” A related disadvantage was the ongoing need to attend to repair and upkeep of the home. This responsibility could pose substantial difficulties. When the interviewer rang the front doorbell, Jordan called from inside to ask the interviewer to enter. He explained that his electric door opener was broken. While waiting for repairs to be made to the front door, he and Kathleen, who both had mobility impairments, used the back door to enter and leave their home.

Stephen had difficulty with accessibility within his two-story home. In order to take a bath or shower, he had to use a stair glide to go up to the second floor, and he was afraid that the stair glide in his home was not completely safe. A new stair glide was on order.

Anthony felt that his house was too small to accommodate him and his housemate Joe. Joe had moved into the second bedroom of the home because the homeownership program office had told Anthony that he needed the financial contribution that this second individual would provide. Anthony felt that Joe had taken over the most convenient kitchen cupboards with his own kitchen supplies, and he disliked the fact that Joe had had a pool table brought into the living room, taking up pretty much the entire room. Joe had told Anthony that he had gotten a good deal on it and had no other place to put it, so Anthony felt that he had to put up with it.

Handling Problems

When problems occurred with the home, homeowners received assistance from agencies, providers of generic community services, and unpaid friends and family members. The interviewees made use of the typical array of repair and upkeep services available in any community either directly (e.g., by looking up the number of a plumber in the phone book and calling) or indirectly (e.g., by calling a support staff person or a family member who would call a plumber).

Most homeowners described specific steps they had taken to obtain contact information about the services they were likely to need. Stephen, for example, explained that if his mother was not available, he would call his sister, and she would advise him on what to do.

Interviewees felt that they were adequately coping with problems, with some notable exceptions. The interviewees who relied on Medicaid to pay for accommodations they needed to live in the home (e.g., the stair glide and door opener) complained that it was time-consuming and complicated to get Medicaid-funded items repaired or replaced when they malfunctioned. Roberta experienced her support system as unstable, in that she needed more support than her informal network of friends could provide, and she was having difficulty arranging for a live-in support person to replace the caregiver who had left.

Community Relationships

Interviewees interacted frequently with family, friends, neighbors, service providers, and other community members. Stephen, for example, had a list of people he referred to as his “circle of support” whom he could call when he needed something: “I can call them up today and say ‘Let's go shopping,’ and they'll make arrangements for one of them to come out and help me out.”

Some direct evidence of such community interactions occurred during the interviews. A driver came to the door to transport Kathleen to an appointment, and a pest control service technician called at the door during the interview with Charles. In both cases it was clear that the homeowner had ongoing friendly relationships with these individuals.

All of the interviewees maintained close relationships with people who had helped them select and purchase their home and who had a significant impact on their life. Most interviewees had also gotten to know and like several of their neighbors, and they related specific occasions when their neighbors had been sources of support.

Despite these contacts, a degree of loneliness was a theme in three interviews. Two interviewees mentioned a wish to have a close intimate relationship with another individual, with whom they could share their home and their life. However, neither had a plan to achieve their dream. Charles, who had had a roommate who had not worked out, was asked whether he liked it better living alone or would perhaps like to try living with someone again. He simply sighed.

Two interviewees had full-time jobs, and 2 others had consistent part-time jobs or volunteer responsibilities. Roberta was currently unable to work at her job because of a lack of adequate personal care, and Charles operated his own vending machine business as a form of part-time self-employment. Charles reported that “it has been a lot of trouble,” however, and that he was hoping to sell the business.

Finances

All interviewees felt that ownership made better financial sense than renting. The primary advantage was that payments for mortgages and taxes increased more slowly than rental costs. Although managing finances was difficult and stressful at times, Jordan and Kathleen handled their own money management, and the remaining interviewees received formal or informal assistance with their finances.

Samuel used some of his personal support funding to pay an accountant to help with his finances. The accountant visited every few weeks to review Samuel's bills with him. For major financial decisions, Samuel called his “circle of support” to his home for a meeting.

For several other individuals, financial planning was dealt with by removing it from the homeowner's control. Charles had had significant debt problems, and these had been resolved by naming Charles's aunt as his representative payee for his Supplemental Security Income and providing her with addresses for all of his bills. For Marilyn, the developmental service agency supporting her was her representative payee and handled most of her bills. Both of these interviewees were satisfied with the arrangement and believed that there was no alternative.

Supports

Roberta and Marilyn had live-in assistants, but Roberta reported that her assistant had recently left, and she was searching for a replacement. Charles had continual staff assistance on a rotating shift basis, arranged by the residential service organization that had assisted him in obtaining his home. The remaining interviewees had access to part-time or on-call support, and Samuel's mother lived in his home.

Relationships with support persons were reported to be satisfactory, with one exception. Charles reported having a problem in the past with a direct support staff person offering to contribute towards the cost of a pay-per-view wrestling TV show and then reneging.

Samuel's mother and Marilyn's live-in support provider were present during and participated actively in the interviews. It was sometimes difficult to separate the views of the homeowner from the views of these support persons. An example illustrates this difficulty. Samuel's “bedroom” was not really a room but an alcove on the first floor separated from the living room by a curtain. When Samuel was asked whether that was his bedroom, his mother, who occupied the real bedroom, answered for Samuel: “That's the way he wants it. He makes the decisions, and he tells me what he wants.” Later, however, in the interview, when asked whether he would like to have his own bedroom, Samuel replied “Well, yes.” Samuel did not want the existing bedroom because it was upstairs, and he was afraid the stair glide was unsafe for him to use, so he acquiesced in the alcove arrangement.

Future Plans

Although this topic was not among the list of interview questions, all of the interviewees volunteered information about plans underway for changes in their homes. This future orientation, and the obvious delight participants showed in making, revising, discussing, and implementing long-term plans for the home and yard, was central to the meaning of ownership for them. Three homeowners, for example, had plans to add or enclose a deck outside the back of the home, and one had plans for doing some kitchen redesign and landscaping work to the yard.

Two interviewees would ideally have liked to move to a different home. Roberta felt that her house and yard were too big and isolated, and Anthony believed that his home was too small and in a part of town requiring too many bus transfers for him to access his job and affordable shopping. Neither homeowner appeared to have access to adequate support to investigate other housing options. For example, Anthony believed that because he had signed a 15-year mortgage, he was required to live in his home for 15 years. Feeling certain that there was no solution to his problem, he had not brought it to anyone's attention.

Homeownership Advice

Two homeowners had no specific advice for others considering homeownership. The remaining interviewees articulated several lessons they had learned and wished to communicate to new homeowners. Their advice is summarized as follows:

  • Make sure you look around. Is this what you are looking for? Put as much time into it as you need to, to make the right decision.

  • Make sure you have enough money and that your finances are straight.

  • Take advantage of homeownership classes.

  • Read everything before you sign it, especially the fine print. People might try to sneak something in there. There are pitfalls to not being careful, and it's a big pit.

  • Always ask yourself “Is this right for me?” Get advice, but then make your own decision.

Jordan warned that despite following all of the advice available, a homeowner should expect that there will still be unanticipated problems. “No matter how much you prepare, you will never know everything. There were times when we just had to wing it.”

Discussion

Homeownership for people with developmental disabilities is still in its early stages, and the selected sample of 7 homeowners from 6 states is very small. However, several tentative insights can be drawn from these data regarding the meaning of homeownership and the process of supporting homeownership for individuals with developmental disabilities.

Selecting and purchasing a home was experienced as a long and arduous process, but worth the effort. Interviewees reported having multiple and satisfying connections with a network of neighbors, family, and other community members. Most important, though, was the sense of freedom and social status that homeownership clearly provided, particularly the opportunity for the homeowners interviewed to express their individuality and make long-term plans in a way that they had not previously experienced.

Money management was difficult for several interviewees; some of the responses to these financial difficulties by residential program staff and families seemed to be “overkill,” in that they removed responsibility and control from individuals who clearly wanted opportunities to learn responsibility.

A variety of supports were evident across all 7 participants, but there was also evidence of misalignment between the support needed by and the support provided to several individuals. Roberta, a woman who was blind and quadriplegic, had difficulty supervising acres of yard work. Anthony had to put up with a pool table dominating his living room and kitchen cupboards taken over by an uninvited housemate, and Samuel used a curtained-off living room alcove as his bedroom and was frightened to go upstairs to take a bath. Jordan and Kathleen were blocked from entering or leaving their front door for months.

These problems resulted in large part from events that were unforeseen at the time of the initial purchase of and adjustment to the home. Thus, the issue seemed to be a deficiency in long-term sustainability and flexibility of support as unanticipated problems unfolded. For example, Anthony had been assisted to buy a home in a neighborhood with no affordable shopping and far from his work. His mortgage costs were contained, but his transportation and grocery costs were far higher than expected. The “solution” presented to Anthony was to accept an annoying housemate to share some of the costs. Samuel was afraid to go upstairs because his stair glide, while apparently not mechanically unsafe, felt unstable to him when he used it. Research into assistive technology use has shown that technology must not only “work” in a technical sense, but must feel comfortable to the user (Riemer-Ross, 1999). These interviewees reacted to their difficulties with resignation, putting up with inconveniences in a way we sometimes refer to as being philosophical. Part of the explanation may be that many of the homeowners interviewed relied on the same people to support them in solving problems who also helped them make sense of the meaning of events and circumstances. Problems that were not in fact solved tended to be viewed as unsolvable.

Many of the difficulties experienced by these homeowners are those typical for low-income homeowners without disabilities. Other difficulties apply not only to homeownership itself, but to the receipt of long-term individualized disability supports. For example, research has suggested that individuals with developmental disabilities can face difficulties in forming close friendships (Pottie & Sumah, 2004) and problems with the quality of services funded by Medicaid have been widely documented (e.g., Foster, Brown, Phillips, Schue, & Carlson, 2003). However, the need for effective supports seems to be especially critical in situations where an individual has become responsible for his or her living environment. Blumberg et al. (2000) found that it was the process of arranging supports for homeownership that drove their efforts to redesign the way services were organized and delivered, to ensure sufficient responsiveness and individualization. As Turnbull and Turnbull noted (2001), any gaps between decisions that need to be made and acted upon and an individual's cognitive ability must be filled by trusted allies. Formal and informal supports must be of sufficient strength and balance to ensure that support network members do not perceive efforts to improve the quality of life of an individual with a developmental disability as negatively impacting their own quality of life.

Several limitations should be kept in mind relating to the small sample used in this study. First, the length of homeownership varied widely across interviewees, and because the experience of homeownership may change over time, it is difficult to assess whether any differences in perspective across interviewees were a function of the length of time individuals had owned their homes. In addition, the respondents were all conversationally competent, and it is possible that their experiences might be different from those of homeowners with more significant communication limitations. Finally, program managers identifying what they believed as especially successful examples may have differed in the extent of their involvement with and personal knowledge of the homeowners served by their program and, thus, in their ability to identify who was and was not particularly successful.

Conclusion

On O'Brien's (1994) three dimensions of homeownership—a sense of place, control over the residence and personal supports, and security and stability—the reports from homeowners we visited and talked with at length were mixed. All of the homes were comfortable, well-furnished, in good repair, and in safe and welcoming neighborhoods. Opportunities for individual expression, such as by raising tropical birds or building a back deck, were evident. Control was compromised in a number of ways, however. Anthony did not want a pool table in his living room or a housemate; and sleeping in an alcove with a curtain instead of in a bedroom was not Samuel's preference. Roberta's difficulties obtaining live-in assistance to help care for her home and grounds were a source of constant worry in her life.

Although the participants in this study were unanimous in preferring homeownership to any other residential arrangement, the difficulties they reported were more serious than has been reported in previous literature on experiences with homeownership for individuals with developmental disabilities. Further, it is important to recall that these participants were not selected at random; they were purposefully chosen by homeownership programs as representing especially successful examples of homeownership.

Homeownership for citizens with developmental disabilities is clearly achievable, and Home of Your Own projects established across the country have found innovative solutions to many of the financial and technical barriers faced by individuals with developmental disabilities seeking to own their own homes. However, long-term flexible support is essential to assisting individuals with developmental disabilities to enjoy the benefits of homeownership over time. It should not be expected that the supports connected with the initial home selection and purchase will remain in place indefinitely and continue to be adequate to address whatever circumstances arise in the future. Live-in caregivers will not live-in to eternity, home modifications will break down or work better in theory than in practice, and people may change their minds and come to feel that their current home no longer meets their needs. The people in the network of relationships and services behind each homeowner must be able to respond in a person-centered way as problems arise and circumstances change, including giving people the option of selling a residence and purchasing another. This understanding of the evolving nature of housing support parallels the recognition in vocational services of the need for periodic assistance to consumers with job change and career advancement in place of indefinite job maintenance (Pumpian, Fisher, Certo, & Smalley, 1997).

Increased efforts are needed to ensure that the focus of assistance remains on the person's needs and goals—not the agency's or caregiver's—and considers how the person can best use their own capacities and resources (amplified by others) to solve their own problems and live their own lives. It is important to continue and expand efforts to make homeownership available to people with developmental disabilities, and part of this effort should include increased attention to building self-determination and person-centeredness into the ongoing support process.

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Author notes

Authors: David Hagner, PhD (david.hagner@unh.edu), Research Professor and Rehabilitation Projects Director; and Jay Klein, MA, Director, Center for Housing and New Community Economics, University of New Hampshire Institute on Disability, 10 W. Edge Dr., Suite 101, Durham, NH 03824-3522. Judith Snow, MA, Founding Associate, Marsha Forest Centre, 24 Thorne Crescent, Toronto, ON M6H 2S5 Canada