A core value of independent living is full and equal participation in life activities. Independent living philosophy emphasizes that much of what limits an individual’s full and equal participation is in the environment in which he or she lives. This includes both the person’s community as well as their home.
Having an accessible and usable home environment is a critical factor in an individual’s ability to live independently and participate in society (DUNN, 1990; Iwarsson & Wilson, 2006; Reid, 2004). Home, the domestic space we inhabit, is the springboard for community participation.
Home is where we prepare for our day. This is where we sleep, bathe, dress, and eat among other activities. It is place of intimacy and personal relationships. Simply put, home matters because life begins at home.
While home is often portrayed as a place of rest and safety, the home may not play this role in the lives of every person. For example, the common design of homes is usually not suited to the needs of people with disabilities. Such a lack of appropriate home design can have major impacts upon people’s lives, particularly if they must exert more energy cooking, cleaning, or bathing among other home activities than they would if their homes accommodated their abilities. This effect may be exacerbated by the fact that people with disabilities spend a large proportion of their time at home. While addressing home access has been a focus of housing advocacy for decades, data from the 2011 American Housing Survey indicate that over 50% of households with someone who uses a wheelchair (manual, power or scooter) still have steps at their entrance (Greiman & Ravesloot, 2015). Clearly there are many people today who could benefit from making their existing home or apartment more usable.
To date, there have been few systematic studies of environmental factors (Seekins et al., 2012; Seekins, Traci, Cummings, Oreskovich, & Ravesloot, 2008), including those factors within the home. There is not much empirical research on how home environments affect the health, independent living, and participation of people with disabilities. This study seeks to fill this knowledge gap by assessing the home usability of individuals living in three different communities and reports on how home usability relates to community participation.
Our sample is comprised of 173 respondents across three communities: Fresno, CA (n=58), Indianapolis, IN (n= 74) and Atlanta, GA (n=41). Descriptive statistics for this sample are in the table below. Respondents were recruited if they could provide a “yes” response to at least one of five disability screening items used in the American Community Survey (ACS). These questions include:
- Are you deaf or do you have serious difficulty hearing?
- Are you blind or do you have serious difficulty seeing even when wearing glasses?
- Do you have serious difficulty walking or climbing stairs?
- Do you have difficulty dressing or bathing?
- Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor’s office or shopping?
- Average Age: 60
- 62% White, 25% African American, 5% Asian, 3% American Indian, 5% Other
- 63% Female, 37% Male
- 28% Married, 24% Divorced, 19% Widowed
- 35% Live Alone
- 22% HS or GED, 35% Some College, 13% Bachelor’s Degree, 9% Master’s Degree or Higher
- 82% Not Employed, 6% Employed Part-Time, 12% Employed Full-Time (30 hours/week or more)
- 31% family income of $10k or less, 22% family income of $10k-$20k
- 49% Own, 43% Rent
The Health and Home Survey asks a short series of questions about impairment to determine disability status based on methodology in the American Community Survey (ACS). The ACS evaluates disability in terms of functional impairments and assumes that a person who reports having at least one of six impairments (hearing difficulty, vision difficulty, cognitive difficulty, ambulatory difficulty, self-care difficulty, and independent living difficulty) has a disability. While impairment is not necessarily the best measure of “disability,” we follow the model of the ACS and use it here as an indicator of the disability experience. We included an additional impairment question in the survey, concerning difficultly grasping objects, informed by impairment questions in the 2011 American Housing Survey (AHS). Twenty six respondents of the survey reported having no impairment and 3 did not answer.
The following impairment types include:
- Hearing: Individuals with hearing difficulty.
- Vision: Individuals who are blind, or have serious difficulty seeing even when wearing glasses.
- Cognitive: Individuals who have difficulty concentrating, remembering, or making decisions.
- Ambulatory: Individuals who have difficulty walking or climbing stairs.
- Self-care: Individuals who have difficulty bathing and/or dressing.
- Independent Living: Individuals who have difficulty doing errands such as vising a doctor's office or shopping.
- Grasping: Individuals who have difficult grasping objects.
*Note that percentages will not add up to 100% as respondents can indicate more than one impairment.
We worked with a team of researchers and local community advisors to develop the Health and Home Survey which asks a variety of questions about home characteristics, home experiences, basic health outcomes, community participation, standard demographics health, and affect. A more detailed list of the measures is below:
- Relationship status
- ACS disability indicators plus grasping
- Equipment use
Current Housing: basic questions about current housing status.
- Housing assistance
- Type of building
- Number of occupants
- Length of tenure
- Age of housing
- Help around the home
- Adaptive equipment used in the home
Home Characteristics: this section asks a series of questions about the physical characteristics within the home.
- Getting into your home
- Kitchen (e.g using stove, accessing cupboards…)
- Bathroom (e.g. presence of grab bars…)
- Living room
- General characteristics (e.g. outlets, flooring, windows…)
- Emergency safety
Experiences in your home: Respondents rated experiences throughout the home across four domains: ease, satisfaction, safety and exertion. Ease, satisfaction and safety are rated on a Likert-type scale from 1 (not at all) to 5 (very much) and exertion is rated using the BORG exertion levels scale from 0 (nothing at all) to 10 (very, very hard).
- Getting into and out of your home
- Using your kitchen
- Using your toilet
- Using your tub/shower
- Using your living area
- Using your storage places like closets and cupboards
- Using your bedroom for dressing or going to bed
- Cleaning and tidying up your home
Borg, G. (1998). Borg's perceived exertion and pain scales. Human kinetics.
Health: includes questions about overall health, health related quality of life, ability to independently engage in activities, weight, visits to the emergency room and nights spend in hospital.
Health Related Quality of Life (HRQL) Scale
- How many days was your physical health not good (30 days)?
- How many days was your mental health not good (30 days)?
- How many days did your poor physical/mental health keep you from your usual activities such as self-care, work or recreation (30 days)? "
- How many days did your pain make it hard for you to do usual activities (30 days)?
- How many days have you felt sad, blue or depressed (30 days)?
- How many days have you felt worried, tense or anxious (30 days)?
- How many days did you get enough rest or sleep (30 days)?
- How many days have you felt very healthy and full of energy (30 days)?
Moriarty, D. G., Zack, M. M., & Kobau, R. (2003). The centers for disease control and prevention's healthy days measures - population tracking of perceived physical and mental health over time. Health and Quality of Life Outcomes, 1, 37.
Brief Community Engagement Questionnaire
- Grocery Store
- Doctors or other healthcare providers
- Large box stores such as Walmart or Home Depot
- Pubic parks or recreation areas
- Exercise facilities
- Shopping malls
- Active Recreation such as exercise, sports or fishing
- Socializing outside the home
- Religious activities such as church services
- Community activities such as voting, meetings
- Entertainment such as movies or sporting events
- Employment (hours)
- School or Education (hours)
- Volunteering (hours)
Gray, D., Hollingsworth, H., Stark, S., & Morgan, K. (2006).
PARTS/M: Psychometric properties of a measure of participation for people with mobility impairments and limitations. Archives of Physical Medicine Rehabilitation, 87, 189-197.
Gray DB, Morgan KA, Dashner J, Garrett L, Hollingsworth HH. Personal and environmental influences on the community participation by people with mobility, visual and hearing impairments and limitations. American Public Health Association, October, 2012, San Francisco, CA
Livingston, N. A., Hargrove, T., Greiman, L., Myers, A., Ipsen, C., & Ravesloot, C. (2015). An investigation into the temporal scaling of community participation measurement. Rehabilitation Psychology, 60(4), 367.
Emotional state: lists a series of words that describe different feelings and emotions and asks the respondent to rate the way they feel right now on a scale from 1 (not at all) to 6 (extremely).
Positive and Negative Affect Schedule (PANAS)
Reproduced from Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Personality Soc Psychol 1988;54:1070.
We recruited our sample by following Dillman’s Tailored Design Method for preparing recruitment materials, providing incentives and conducting follow-up. We purchased publically available addresses from US Data corps (www.usdatacorporation.com) , in three communities, Fresno, CA, Indianapolis, IN, and Atlanta, GA. We sent a letter and postcard about the study to a random sample of 7,000 households divided equally across these communities. Individuals who returned a postcard indicating that someone in their household could answer “yes” to at least one of five American Community Survey (ACS) impairment questions and was interested in completing the survey were enrolled in the project. Additionally, a similar postcard was sent to Centers for Independent Living consumers in these same three cities. These interested individuals were sent a survey along with $10, a return envelope and a pen. In addition to the post card recruitment we also utilized some snowball recruitment when survey respondents called or left information about some who may be interested in the study.
We collected 158 postcards from the general population and 66 from the CIL consumer population across our target communities (Atlanta, GA, Indianapolis, IN, and Fresno, CA) for a total of 224 return postcards and subsequently mailed surveys. Snowball recruitment added 11 additional surveys for a total of 235 surveys mailed. One hundred and twenty (120) surveys were returned from the general population recruitment, 5 from the snowball recruitment, and 48 from the consumer recruitment for a total of 173 surveys. This gave us a response rate of 75% from those who returned post-cards.