Understanding successful transition to independent living: A qualitative study of young adults with disabilities

Abstract

Background:

Independent Living (IL) involves having choice and control over where and with whom one lives. People with disabilities are less likely to live independently than their peers without disabilities.

Objective:

The purpose of this study was to understand the perceptions of young adults with mobility disabilities regarding IL, how they define IL, and what advice they would give others considering living a more independent life.

Method:

Semi-structured interviews were conducted with six young adults with mobility disabilities who had successfully transitioned to living independently. A content analysis was used to identify emergent themes from the interviews.

Results:

Results indicate that participants had individualized perceptions of the definition of IL. Participants identified many barriers and facilitators to IL, including the physical layout of housing, available amenities, and social support. They recommended preparing for IL in advance and taking advantage of outside resources to enable a successful transition.

Conclusion:

Young adults with mobility disabilities define IL in various ways, which may have an impact on whether they consider their transition to IL successful. Findings can be used to guide recommendations for young people with disabilities to use to ensure a successful transition to IL.

1. Introduction

Independent living (IL) involves having choice and control over where, and with whom, one lives in such a way that one can engage in the community’s social, economic, and cultural life. Living independently does not necessarily mean a person can do everything by themselves, but rather that one has choice and control over their life (Brisenden,1986). Independent living is also a social movement, one that stresses individual empowerment and advocacy aimed at removing the social and environmental barriers that prevent people from full participation in their community (Barton, 2009; DeJong, 1979). Research has found people with disabilities are less likely to live independently or achieve economic independence compared to their peers living without disabilities (Morris, 1999; Wagner et al., 2005). Therefore, a focus on the factors that most likely enable IL for young adults with disabilities has become increasingly important.

The ages between 18 and 25 generally mark the time period when individuals begin to transition away from their family home to a more independent life, and is a period of time marked by physical, environmental, social and/or emotional changes (Schulenberg et al., 2004). Although many studies focus on transitioning from a dependent to independent situation after completing school and during the aforementioned period of time, people with disabilities can transition to IL at various periods (e.g., school years, young adulthood, later adulthood; Trainor et al., 2019). Whether one is able to transition to IL may be partially dependent on skills learned earlier in life. For example, early studies found that high school students who had work experience had better post school employment outcomes compared to those who did not work during high school (Hasazi et al., 1985). A review of literature conducted by Test et al. (2009) explored how skills taught in school affected the IL, employment, and educational outcomes of students with disability. Findings from this review revealed 16 evidence-based predictor categories (e.g., independent living skills, self-advocacy or self-determination, social skills, student support from family or friends), all of which correlated significantly with post school employment.

Other researchers conducted in-depth interviews with youth or young adults with disabilities living independently in an effort to understand the factors that most affected their transitions. Themes facilitating successful transitions that emerged included financial assistance, parental support and expectations, positive thinking, quality schools that provided support, choice on personal assistance, owning a home, paid work, and perceived ability to successfully be employed and care for one’s own health (Hendey & Pascall, 2001; Hamdani et al., 2015; Pascall & Hendey, 2004). Participants further expressed the desire to live with as little help as possible while simultaneously acknowledging that living without any help at all may not be possible and therefore it was acceptable that one may need some help (Hamdani et al., 2015). Results from all the aforementioned studies indicated the strong influence of parental support, a factor which may not be applicable in many cases. Additionally, a number of these themes reflect guidelines and recommendations provided by disability advocacy groups, which advise people who are planning to transition to IL to prepare for such potential issues as transportation, self-care skills, personal safety, employment, financial literacy, and recreation and leisure (Center for Parent Information & Resources, 2017; National Community Living Resource Center, n.d.; Project 10: Transition Education Network, n.d.; Talent Knows No Limits, n.d.).

More recently, Mazzotti et al. (2016) conducted a systematic review to extend the literature on predictors of post-school success for IL and participation. The results supported previously identified predictors of success such as learning self-care, social, and independent living skills; receiving a diploma; or gaining valuable work experience. This review also identified new predictors of successful transition including parental expectations (e.g., expectations that their child will attain such goals as having a job, attending postsecondary education, and being self-supporting), goal setting, and the ability to independently go where one needs or wants to go.

Overall, more research is needed to better understand the lived experiences of young adults who have transitioned successfully to IL to provide actionable recommendations for individuals, families, services, and programs. Furthermore, there is a continued need to examine the personalized definitions of IL and explore factors within the individual that can be utilized to support a successful transition to IL. Additionally, there is a paucity of research to understand the viewpoint of people with disabilities as they may perceive a life transition that entails an event other than completing school. Therefore, the purpose of this study was to understand the perception of young adults with physical disabilities as they transition to living a more independent life, however that may be defined for the individual. Specifically, this study aimed to answer the following three questions:

How do young adults with disabilities define “Independent Living?”

What are the lived experiences of young adults with disabilities as they move to Independent Living?

What advice do young adults with disabilities have for a successful transition to Independent Living?

2. Method

The intent of this study was explorative in nature; therefore, phenomenological traditions were used to understand the lived experiences of people with disabilities who had recently transitioned to IL. The following sections outline the recruitment, data collection, and data analysis efforts. The local Institutional Review Board approved all procedures in this study.

2.1. Sampling frame & participants

Purposive sampling was used to recruit participants who were identified by a staff member at the Association of Programs for Rural Independent Living (APRIL). The aim was to include participants who 1) were between the ages of 21 to 30 years old, 2) identified as having a mobility disability, and 3) self-identified as moving to a more IL situation (e.g., from an institution, out of a group home, out of a family home) within the last two years. The APRIL staff member was also instructed to identify people with different housing types, income sources, composition of homes, and settings from which they moved. The APRIL staff member reached out to potential participants to inquire about their interest in participating before sharing their contact information with the research team. A member of the research team contacted potential participants via email to provide detailed information about the study. Interested participants were screened to assess eligibility and six eligible participants were identified who agreed to be interviewed. Qualitative researchers have acknowledged that six interviews are enough to reach saturation using a phenomenological approach (Morse 1994; Creswell, 1998; Guest, et al., 2006). Participants received $50 for their participation. Table 1 displays participant characteristics.

Table 1.

Participant Demographic and Descriptive Data.

Variable	Categories	N	%
Gender	Female	3	50
	Male	3	50
Mean Age (range, SD)	26.17 (23–30, 2.48)
Education	High school graduate / GED	1	16.7
	Vocational training	1	16.7
	Some college / Associate degree	1	16.7
	Bachelor’s degree	2	33.3
	Graduate study	1	16.7
Employment	Full time	2	33.3
	Part time / student	1	16.7
	Self employed	1	16.7
	Looking for employment / student	1	16.7
Hispanic or Latino	Yes	2	33.3
	No	4	66.7
Race	White	4	66.7
	Other	2	33.3
Physical Disability	Cerebral palsy	5	83.3
	Genetic condition	1	16.7
Co-occurring conditions	Dyslexia	1	16.7
	Depression	1	16.7
	ADHD	1	16.7
	OCD	1	16.7
	Generalized anxiety disorder	1	16.7
	Asthma	1	16.7
	Pain	1	16.7
Benefits	Supplemental Security Income (SSI)	3	50
	Other	2	33.3
Housing	Own	1	16.7
	Rent	3	50
	Other	2	33.3
Building Type	Single family/house	4	66.7
	Apartment building w/ 4 + units	2	33.3
# People in household	One	2	33.3
	Two	1	16.7
	Three	2	33.3
	Six	1	16.7
Annual Income	Less than $8,000	1	16.7
	$8,000 to 15,000	2	33.3
	$30,000–40,000	2	33.3
	>$40,000	1	16.7

ADHD: Attention deficit hyperactivity disorder; OCD: Obsessive-compulsive disorder.

2.2. Data collection

Semi-structured interviews were conducted with eligible participants about their experiences living independently between February and July 2019. The interview questions, developed in consultation with APRIL and young adults with disabilities, explored the meaning of IL, identified challenges and facilitators to IL, and garnered insight into the advice participants would give to other young adults living with disabilities interested in living independently. Interviews were conducted remotely, recorded via a video conferencing system, and lasted approximately 45–60 min each. One interview was conducted by the first and fourth author together and the remaining were conducted by the first author. Each interview was transcribed verbatim, omitting identifiable information (e.g., participant name). Interviewers checked the transcripts for errors and inaudible sections before finalizing for analysis.

2.3. Data analysis

The research team conducted a content analysis to extract meaning from the qualitative data by identifying emergent themes using an inductive approach. Two researchers with expertise in the field of disability, young adults, transitions, and IL carefully read through each transcript multiple times to identify emerging themes individually. The researchers then met to discuss the identified themes, categorize them into more general codes, and added definitions and examples to establish the initial coding scheme. In this case, codes were either single words or short phrases that represent a specific theme in an effort to systematically organize and analyze the data (Elo & Kyngӓs, 2008). Using the first iteration of the coding scheme, a third researcher with less experience in the field of disability, young adult transition, and IL then applied the coding scheme to a random transcript. Revisions to the coding scheme were discussed and applied with all three research team members. Transcriptions were uploaded into a qualitative data analysis program, MAXQDA (VERBI Software, 2019), and segmented into units of analysis by the primary coders. Two researchers (one expert, one non-expert) individually coded another random transcript. Interrater reliability was conducted, and discrepancies were discussed with the third expert researcher until a consensus was reached. The coding scheme was then finalized, and this process was repeated for all six transcripts. These collaborative efforts were implemented to ensure that the analyses and interpretation were unbiased from researcher beliefs or assumptions (Brantlinger et al., 2005). Table 2 shows the finalized coding scheme with code definitions.

Table 2.

Finalized Coding Scheme.

Code and Subcodes	Definitions
Inside the Home	Factors that serve as either a barrier or facilitator to IL that are relevant to inside the home (e.g., housekeeping, cooking, home usability, basic daily activities)
Outside the Home	Factors that serve as either a barrier or facilitator to IL that are relevant to outside the home (e.g., transportation, work, parking)
Services	Formal or informal supports that assist with completing various tasks associated with IL (e.g., grocery delivery, housekeeping, personal care attendant, family member)
Health	Physical or mental health issues, secondary conditions, health conditions related to the primary disability
Financial	Anything having to do with finances such as financial support (formal or informal), cost of living, financial planning, etc.
Defining IL Control Caring for oneself	When defining IL, any reference to the ability to control oneself or one’s environment by financial independence, completing activities of daily living alone or with limited help or assistance, etc.
Advice for Others Preparation Using your resources	Providing personal advice for others looking to transition to IL; regarding preparation for the transition (e.g., looking for home, filling out applications, having finances in order) or references to using available resources, supports, or services

3. Results

The findings presented in the subsequent sections represent themes identified from the transcripts that provide answers to the three research questions. Individualized definitions of IL are provided. Challenges and facilitators regarding the lived experiences among the participants are included, as well as advice participants would provide to peers with disabilities who may be considering IL. Table 3 displays individual participant living circumstances for context.

Table 3.

Participant Living Situation.

Participant #	Previous living situation	Current living situation
1	In home with parents	Alone in an apartment building
2	In home with mother	In a family home as part of Alternate Family living program
3	Student housing with roommate	Alone in an apartment building
4	Apartment with significant other	House with significant other
5	In home with mother	With mother – obtained home modifications and began paying for rent, phone, internet, tv, food
6	Alone in one bedroom apartment	With parents in home due to a job loss, pays rent

3.1. Research question 1: Defining independent living

Researchers asked participants to share their personal definitions of IL. Emergent themes include a sense of control over daily activities and tasks, as well as having the ability to care for oneself independent of supports.

3.1.1. Control

To a couple participants, IL meant having choice and control over their own lives. As Participant 1 said,

I think IL is the ability to control your own life. I need to practice what I preach because I always feel like I’m a failure at IL because I can’t do things as well as other people do and I remember that my own philosophy is that living independently doesn’t mean that you do everything yourself or that you do everything perfectly it just means being in control of where you live, and what you do and who you hang out with. It really gets me when I see a lot of parents of kids with disabilities saying “Oh my kid will never live independently” because everybody can live independently. Independently does not mean without support. Everybody gets support in different ways, it’s just for people with disabilities it’s a little more obvious.

For this participant, needing support while living independently was still IL, as they had choice and control over that support.

Another participant echoed the idea of control but in the context of not receiving help. Participant 4 noted, “Living independently means that I can live in a place on my own without anyone’s help financially or physically.”.

Finally, one participant perceived that a combination of ideas constituted IL. As Participant 2 said, “Independent Living would be like…be in a place on my own, be able to hire staff that could help me, be able to have friends over, all that.” This participant expressed that having their own space and having control over the help necessary defined IL.

3.1.2. Caring for oneself

Having the ability to care as much as possible for oneself also played a role in these participants’ perceptions of living independently. As Participant 5 stated,

The way I look at it, is that if you can live in any house, condo, whatever, and even if you do have government help, as long as you aren’t getting most of your help at home from parents. If you do most of what you do either on your own or with just a little help, or it doesn’t even have to be that, but basically if most of your day is doing things that you can do on your own, and you only need help, say, with taking a shower or having a meal. And you get help from a caretaker, I would say that you’re pretty much independent. At least that’s the way that I look at it.

Participant 6 echoed this sentiment of being able to do most things by oneself. This participant said,

Living independently is being able to pay your bills, pay your rent. To other people that may seem like a basic kind of thing, oh everybody does that, but about ten years ago I never thought that I would do that by myself, live on my own or live with roommates, I kind of didn’t foresee that happening. My parents had a talk with me one day and they said, our biggest concern is never going to be how much money you make, what kind of car you drive, or anything like that. Our biggest concern is that one day we’re going to pass on and we want to be sure that you can fend for yourself, you can cook, you can clean, you can get yourself where you need to go and stuff like that.

3.2. Research question 2: Lived experiences

Participants described their recent transition experiences as well as their experiences post-transition to provide a better understanding of aspects that supported, or hindered, their ability to live independently. The following themes that answered the research question were identified: Home features, community features, programs and services, general health, and finances.

3.2.1. Home features

Participants identified various facilitators that were described as factors inside the home, which directly affected the decision about where to live. For example, Participant 3 noted the physical layout of the apartment was critical for a successful transition, “Being able to get in and out of the apartment was very important. And having an accessible door was very important. Just be able to move around, one floor no stairs” and “the bathroom is all accessible. There’s no bathtub, all roll-in shower, which is nice.”.

Participants also identified changes made to the physical layout of their living situation so as to create a more usable home. Participant 3 explained: “When I moved in, we had to add a lot of rugs and things like that for me so that I don’t fall. A lot of rugs in the living room.” Another participant, Participant 4, described adding unconventional objects or furniture throughout the home to maintain stability and balance as she moved around in her home: “I just make sure there’s enough stuff around to hold onto. We’ve kind of strategically placed bookshelves and things like that.” Participant 6 added a ramp to their home in an effort to make the entrance more accessible, “There was a step up to get in so I went to Wayfair and ordered a little ramp that we installed in the doorway.”.

Contrarily, other features inside the home were identified by participants as obstacles to successfully using their home and limiting their choice. For example, Participant 1 was unable to secure an apartment on the ground-level, explaining how that was a concern when it came to safety, “I’m on the fifth floor, so it was a little difficult. That was another thing I had to compromise on. I really wanted to be on the first floor of a building, or at least the second floor because my fear was always that in an emergency, I would be screwed, basically.”.

Housing amenities were also identified as both facilitators and challenges to participants’ perception of successfully navigating their environment and living independently. Such amenities included access to laundry units, fitness facilities, or garbage disposal stations. As Participant 1 noted, “Luckily, I have a washer and dryer in my apartment.” However, Participant 3 described difficulties related to laundry, “Their laundry site is not on site, and so, unfortunately I have to go back behind this building.” This challenge was met with a unique response strategy:

Same with the laundry, carrying laundry. I’ve had to get a little bit creative with putting my laundry in reusable grocery bags. I’ve had to use those, put them on the back of my chair just to carry laundry in and out, same with laundry detergent.

This participant also described difficulties accessing their on-site garbage bins, despite being relatively independent overall:

The only part of it that I needed help with was taking out the garbage. Because obviously, I’m only five feet tall and, if I’m dealing with a dumpster, that’s over my height and trying to manage the wheelchair, manage the garbage, and not tip over. That right there is something that I would need help with.

Although various amenities were posed as challenges to achieving IL, most participants described their successful response strategies for dealing with these problems. The challenges were seen as obstacles to overcome rather than deal-breakers to IL.

3.2.2. Community features

Participants also reported factors outside the home as facilitators and barriers to achieving IL. The resulting themes included access to transportation, shopping centers (e.g., grocery stores), and their places of employment. For example, Participant 1 noted the importance of living near accessible transportation:

The biggest thing was I had to be near the metro subway system. I don’t drive because of my disability, and so I knew that it was really important for me to have access within walking/rolling distance to public transportation.

Another participant, Participant 3, expressed challenges related to transportation since living independently given the location of their residence and accessibility to the public bus system:

The transportation was a change. Because before, I was mainly using the school bus, which the University has their own transportation and they go right by the student housing. Anytime I wanted to go to the school I would just get picked up, they would take me there. No problem. Since moving here, the transportation was a little bit of a challenge. I had used the city bus before, but not as much. It was like only for recreation – to go to the grocery store or go to the mall or whatever. But now I’ve used it a lot more, obviously, because with the street that I’m on the only bus that goes by is the city bus.

This participant went on to describe the extra time spent on the city bus, as well as the inaccessibility of the paratransit bus system:

I’m on the bus for about 40 min before I’m finally at the school. I can’t even use the paratransit ticket now, because I have class at nine in the morning and they don’t start till 9:30 am. And I’m not done with work until after five, and they’re [paratransit bus] done at 4:30. In my opinion, I think that they need to expand their hours. But I know that that’s tough too, but if I can go from nine to five every day… so can everybody else. But that’s just my opinion.

Participants perceived the importance of having readily available transportation to ensure control over where they could go and when they could get there.

Proximity to community services was also important to many participants. As Participant 5 reported: “The other good thing is that a lot of the major grocery stores and shopping centers are pretty much within walking distance, too.” Another participant, Participant 6, stated: “Two things really took precedent over the apartment I need. One was the price, and the second was the proximity to my employer, which was only about 3 miles.” Overall, living near stores, places of employment, and transportation were all important IL facilitators.

3.2.3. Services

Participants also noted how important various service programs were to successful IL. Examples include services intended to directly support IL for people with disabilities such as Medicaid home and community-based services (HCBS) arrangements, which provide care and support for persons with disabilities in a private home environment. Other services included smart phone applications that facilitated other types of service such as grocery delivery, housekeeping, and transportation. As Participant 1 noted,

I mostly rely on Peapod grocery delivery. It’s not cheap, but I do it, and I get most of my staples from Peapod. I generally have a delivery come twice a month, maybe a little less depending on the month.

This participant also used services for housekeeping purposes stating,

I have a lot of trouble cleaning my apartment, and I can’t really do much of it myself. So, I hired Handy. It’s kind of like Uber for cleaners, so they’re all independent contractors, and you can set up a plan, and they’ll send someone at the time and date specified on your plan.

Participant 4 reported using Lyft or Uber applications for her transportation, stating, “If it’s just me, if I’m wanting to go somewhere, I’ll either use a Lyft or an Uber.” Other sources of support and services emerged that were less formal. For example, several participants noted how helpful their housing management staff were, particularly with home modifications and accessibility on the property. As Participant 1 said,

The staff here was just really great. I was like, ‘I need grab bars in the shower.’ They were like, ‘Yea, sure, no problem.’ So, I have grab bars in my shower. And, they are always willing to help me carry packages upstairs. They were really great.

Another participant, Participant 3, stated:

The maintenance gentleman here was all about it [installing grab bars]. If there’s anything, all four of them keep telling me, ‘If there’s anything wrong, or if there’s anything you need or, anything you need at all’ they keep saying it.

and “The general attitude of the staff I interacted with back here was so nice.” One of the reasons this participant is content with maintenance is because of snow removal. This participant noted, “They’re very supportive and they’re very good about, especially over the last few months, of snow removal.”.

Participants also reported support from others when entering into IL such as family, friends, mentors, or even neighbors. As Participant 1 noted, “My family is a great source of support to me.” And Participant 3 said, “When I finally moved in, my parents were here and they helped me.” This support was available for whatever participants needed, whether it was help with shopping for a place to live or household items or navigating the process of signing a lease. As Participant 1 noted, “My parents walked me through it [the lease] via text and via email.”.

Participants relayed that they have received support from others in addition to family, such as from neighbors and friends. As Participant 5 said,

What’s good about living where I am now is I’ve known all of my neighbors for a while. If I ever need help while someone is not here, which is very, very, very rare, but all of my neighbors in the village, they’re like, if you ever need help, call us.

And Participant 3 stated,

That’s where my professor came in and I contacted him and he said, ‘We can totally get your wheelchair in the back of my pickup truck, we’ll figure it out. It’s no big deal.’ So that’s what we ended up doing.

Finally, Participant 1 noted, “I’ve made a lot of friends and a lot of connections, and I’m really happy here.”.

3.2.4. Health

Another important topic that affected participants’ IL experience was general health. People with disabilities are often at a heightened risk of developing secondary conditions such as obesity, hypertension, mobility limitations, diabetes, fall-related injuries, or even mood disorders such as anxiety or depression (Froehlich-Grobe et al., 2016; Healthy People, 2020; Strine et al., 2005; Washburn et al., 2002). Secondary conditions may increase the severity of the original disability and negatively impact overall health and independence for people with disabilities. This phenomenon was reflected in the current findings. For example, when discussing the act of completing daily routines, Participant 1 noted:

Chronic pain and chronic fatigue from cerebral palsy. Attention deficit hyperactivity disorder (ADHD) also means that I forget to do things constantly. I’ll be telling myself for a week, ‘Oh! You should get groceries delivered! You should get groceries delivered! You should get groceries delivered!’ And then I open the fridge and I’m like, ‘Oh! I gotta get food.’ It’s just a process, and it’s very exhausting.

This same participant explained how secondary conditions impact her ability to navigate her community, “I have severe directional perceptual issues related to cerebral palsy, and I could not find my own way to the metro for like a week.” Finally, one other person has insomnia and that affected how they moved. Participant 3 said, “I’ve had insomnia for six years, so I don’t sleep much. Sometimes, while the world is completely sleeping, I’d be packing, at three in the morning.”.

3.2.5. Financial

Several participants recalled the impact financial planning and financial assistance had on their ability to live independently. For example, Participant 1 noted, “I was just looking for the price point. I had a general idea of how much money a month I could afford to pay for rent, and so that narrowed it down.” Another participant, Participant 4, explained the sacrifices made in an effort to purchase her own home, which included living in a recreational vehicle (RV); other participants discussed the budgeting and savings plans put into place to facilitate their transition to IL. Participant 6 described having to return to living with their parents due to financial constraints:

So recently I had to move back in with my parents after 10 years of living on my own. I lived on my own from August 2009 to April 2019, so almost 10 years. I had two jobs to pay rent, and I lost my big paying job, which took care of most of my bills and my rent, and after losing that job, I had no other choice.

Overall, participants identified several financial factors that served as facilitators or barriers to achieving the IL goals.

3.3. Research question 3: Advice for others

To provide actionable recommendations for individuals, families, services, and programs, we sought guidance from these young adults who have navigated successful IL transitions. Participants had advice based on their personal experiences for other people who are transitioning. Advice fell into the themes of preparation and using the resources available to you.

3.3.1. Preparation

Many participants recommended preparing for IL as early as possible. As Participant 1 said,

I would say to people, start preparing to IL before you actually do it, way before you actually do it. I kind of got a rude awakening when I went away to college and realized I knew nothing… I was never really taught how to cook or anything.

This preparation extended to more than just physical skills. As Participant 3 noted, “I have no idea how I did it [move], but it was very, very stressful. If somebody is going to move into independent living, be prepared for that.” This preparation extends to finances as well. As a third participant, Participant 4, stated, “Make sure you have enough money. Money is your most important thing. Your finances have to be together before you decide to take any leap of faith and move.”.

In order to prepare for the stress of transitioning to independent life, one participant noted that people should go easy on themselves. Participant 1 noted,

Give yourself a break, it’s not going to be easy. I think that’s maybe the point I would emphasize the most. It’s not going to be easy; it’s not supposed to be easy. And two years on, it’s still difficult. I love it and I enjoy it, but it’s still difficult. It’s very, very hard to live independently when you have disabilities. I would tell people to just go with the flow and not be so hard on themselves, kind of learn the tips and shortcuts to maximize your independence. I would try to give them advice on the services and shortcuts and accommodations that I found work for me.

3.3.2. Use your resources

Participants also recommended using all the resources that are available to them, such as their Center for Independent Living (CIL). CILs are community-based, non-profit agencies run by people with disabilities that provide a range of services for people with disabilities (Independent Living Research Utilization, n.d.). As Participant 2 notes, “Talk to their Center for Independent Living and gather all your information before you make a final decision.” Participant 5 said,

I would say make sure that you have all of the help, or all of the different agencies help, that you possibly can before moving. And then, when you think that you found a place on where you want to move to, find out their rules on what modifications can you do. Because there are a lot of associations that are pretty picky on how they want to make sure that each condo, each apartment, each house, looks exactly like the other houses. And then, as far as inside, if they’re in a chair, I say make sure that it’s a nice open house, with large hallways. Because a lot of the places that governmental agencies do help with, they only let you go to certain complexes.

Aside from preparing and using your resources, it was also emphasized that one should, if possible, see their living site first-hand before moving. As Participant 4 noted, “But you can’t really tell what’s going to be accessible or not until you actually look at it.” A second participant highlighted the importance of seeing a place before renting it. Participant 6 said,

They may have the nicest pictures in the world but the person who’s potentially going to be living there is you. Only you know your accessibility needs. Only you know, okay that’s something I can work around or you know as lovely as this place is, as much as I like it, that’s potentially going to be an issue, that’s potentially going to harm my safety. Maybe this place isn’t the place for me.

4. Discussion

The aim of this study was to understand the lived experiences of young adults with disabilities as they transition to IL. The overall findings from these interviews indicate that there are many features, both inside and outside the home, that affect a successful transition. Additionally, we learned that young adults define IL differently from one another based on their own unique capabilities, needs, and goals. The participants were asked to define IL, and the results revealed distinctive perspectives on what makes one ‘successful’ in this realm. Additionally, participants recommended others take a number of steps, such as early preparation for transition, in order to increase the likelihood of a successful transition.

These results relate to previous literature in a number of ways. First, participants provided varying perceptions on what it means to live independently, similar to previous research. For example, previous definitions include having freedom of choice (Adolf, 1992) and a desire to be as independent as possible, which meant living with as little help as possible (Hamdani et al., 2015). However, the participants in the Hamdani et al., 2015 study also noted that it is okay to get some help as needed. These ideas were also reflected in the current study, with participants defining IL as having control of their own lives, and being able to care for themselves, all while seeking help and support as needed. Similar to the results in Hamdani et al., participants in the current study expressed very individualized definitions/perspectives of successful IL as the levels of formal and informal support were acceptable and at times, necessary, to live independently. Of note, participants in the current study do not equate IL to living alone or owning a home, which differs from the way previous research, especially research related to postsecondary outcomes, conceptualize independent living. Despite the emphasis on choice, control, and removal of environmental barriers in the IL movement, researchers and policy makers tend to conceptualize independent living prescriptively, as simply not living with parents/caregivers but rather alone or with a partner. For example, a report funded by the United States Department of Education designated people with disabilities as living independently after completing school if they either lived by themselves or with a partner or roommate (Newman et al., 2011). Other researchers conceptualize living independently as living by oneself rather than with parents, in a community-based congregate, or non-community based congregate setting (Halpern et al., 1995; Wehmeyer & Palmer, 2003).

However, our data reveal a more experiential definition rooted in choice and control. For example, one participant perceived they were still living independently even though they moved back in with their parents because they paid rent and still had choice and control over their life. Additionally, another participant perceived an increase in IL because they got a home modification that allowed more control over their life and also began paying for rent and services while still residing with family. These situations also demonstrates that people can transition to IL at time periods that go beyond finishing school and moving to a space by themselves. The findings of this study support the notion reported by Hamdani et al. (2015) that traditional, prescriptive, definitions of successful IL should be questioned and highlight the need to include people with disabilities in research related to their lives to ensure outcome measures are socially valid.

Participants in this study listed recommendations that mirror previously identified predictors of success, such as learning self-care skills, expanding social skills, and acquiring various independent living skills (e.g., financial planning, using transportation, cooking, time management; Mazzotti et al., 2016; Test et al., 2009). For example, participants in this study recommended that youth and young adults prepare for IL by learning daily living skills (e.g., cooking, financial skills). Another predictor of successful transitions presented by Mazzotti et al. involves being able to get where one needs to go. Likewise, participants in the current study frequently reported that various factors outside the home, such as having access to transportation and being close to stores that have the items they need, was important to successful IL.

Finally, Pascall and Hendey (2004) found that individual conditions such as positive thinking emerged as influential to successful transitioning. Participants in the present study mentioned as well that it is important to understand transitioning will be stressful and one participant noted it is important to give yourself a break and not be so hard on oneself. Additionally, both Pascall and Hendey and Hendey and Pascall (2001) note the importance of support, especially familial support, a sentiment echoed by participants in the current study. This support could come in the form of parents, friends, neighbors, or even housing management staff.

These results have a number of key implications for people with disabilities who are transitioning to IL. First, the need to understand how people with disability define IL is important, as this definition will inform what constitutes success. Without including people with disabilities in their own IL planning and understanding their choices, it is impossible to know whether the transition is truly successful, or to say that the person has control over their transition. Second, the results indicate the importance of preparing in advance for IL. Organizations that serve people with disabilities, such as CILs, can help prepare their consumers by offering classes (e.g., independent living skills classes) and ensuring resources are available. Finally, building a support system can ensure help is available should barriers arise or needs change over time.

This research contributes to the literature in several ways. The results provide participant perceptions on definitions for IL, which are important for understanding the individualized needs and priorities of persons seeking a successful transition to living independently. These individual definitions also help to expand upon a previously narrow concept of what successful IL means in various studies. Next, participants provide key advice on how to successfully transition to IL, which provides a basis to create actionable recommendations for people who are going to transition to IL. Finally, as the participants in the current study transitioned at different stages in life (e.g., new job), this research adds to the literature body on transitioning beyond finishing secondary education.

There are a few limitations to this research. First, the sample size was small and had a limited amount of diversity in disability type; therefore, the generalization of findings may be limited. Second, purposive sampling may have led to sampling bias. Third, the study only included young adults. The study only included this age range as this is the age range on which the majority of previous research focuses as well as the time period people transition from school, though this study did expand on previous research by interviewing people who transitioned for reasons beyond schooling. However, transitioning to more choice and control over one’s life—IL—may occur at any age, thus, future research efforts should consider including adults of any age.

Future research should continue to evaluate how one’s definition of IL affects successful transitioning. The perception of success is based on the unique needs and strengths of a person and, therefore, success for one person may mean living by oneself but near a caregiver while another may define success as living without the help of others. Additionally, inquiring about whether and how the definition of successful IL changes during various stages of transition (e.g., before transitioning, immediately after transitioning, a year after they have transitioned) would provide greater insight into the evolution of these individual definitions. Finally, research should create, with stakeholders, actionable resources (e.g., check lists) for people with disabilities to complete and evaluate whether these resources aid in successful transitioning.