THE ROLE OF INDIVIDUALS WITH DISABILITIES, FAMILY MEMBERS, AND PROVIDERS IN THE HOME MODIFICATION PROCESS IN RURAL NORTH CAROLINA

B.R. Connell, PhD,1 C.T. Turner, PhD,2 and K.J. Gruber, PhD2 1Center for Universal Design, North Carolina State University, Raleigh, NC 27965-8613 2Housing Research, North Carolina A&T State University, Greensboro, NC 27411

ABSTRACT

This paper reports on an in-depth examination of the role of the respondents, their families, providers, and volunteer groups in obtaining and installing accessible features in the homes of adults with disabilities in rural areas. The study focused on three key questions: who identified the need for a modification, were product/materials purchased or donated and by whom; was construction/installation labor contracted for or donated and by whom. In the majority of cases, the necessary materials/products were purchased and the necessary labor donated. Individuals with a disability did not identify the need for the majority of observed modification, although they did pay for a majority of those that were purchased. Staff of local agencies that assisted in home modification service delivery reported that utilization of available services was negatively impacted by lack of awareness among consumers about programs and fragmentation of services.

BACKGROUND

Accessible housing, like all housing, can be conceptualized as a process as well as a product. There is interest in understanding how accessibility is achieved as well as what is achieved. This study built on two earlier studies that examined the presence and absence of accessible features and home modifications and their impact on ease and independence in routine daily activities for an urban/suburban, moderate income sample (n=486) and a rural, lower income sample (n=123) of adults with mobility impairments. (1,2) The types of accessible features adopted by the majority (> 50%) of individuals in both samples were similar for entries (e.g., adequate door width, maneuvering space, and ramped access), kitchens (e.g., maneuvering space, storage within reach), and bathrooms (toilet seat and sink height appropriate, maneuvering space adequate). However, the adoption rate for specific accessible features was often higher among the rural, lower income sample. For example, a larger percentage of the power wheelchair users in the lower income, rural sample than the more affluent, urban/suburban respondents in reported adequate maneuvering space at the entry, adequate access space at the oven, kitchen storage within reach, shower grab bars, and toilet seat at preferred height .

We had expected the lower income and more rural sample to have fewer accessible features in their homes -- we had assumed they had access to fewer and/or less extensive home modification services and modifications would be less affordable for them. However, they appeared to have been at least as successful as the more urban/suburban and affluent sample in addressing their accessibility needs. Thus, the comparative results were not expected and raised a number of questions about the home modification process utilized by the rural respondents. In other words, what was the "process" by which their housing "product" had been obtained?

RESEARCH QUESTIONS

The study addressed three major questions:

1. Who identified the need for a modification?

2. Were product/materials purchased or donated and by whom?

3. Was construction/installation labor contracted for or donated and by whom.

METHODS

The initial study to determine presence and absence of accessible features and home modifications involved personal interviews with 128 individuals in two rural counties in Piedmont North Carolina selected on the basis of their comparatively high concentration of persons with disabilities (based on the 1990 census). Respondents were located through contact with agencies providing services to people with disabilities, informal social networks, and local ministers. (2) Participants from the initial study who had indicated they could be contacted for future studies (n=95) were contacted to determine if the accessible features in their homes were added while they were living there, and, if so, how the modifications were achieved. Some of these initial study participants could not be reached because they had unlisted telephone numbers, did not have a telephone, or were deceased. A total of 62 (of 95) participants from the initial study participated in the follow-up study, and 49 (80%) had made modifications to their homes while they lived there.

Documentation of the presence or absence of accessible features and home modifications for the subjects included in the study described here were obtained in the initial study through home visits and personal interviews. (2) In the follow-up study, described here, a telephone interview methodology and limited site visits were used. For each accessible feature and home modification present in the home of each respondent, a "history" was obtained that documented who identified associated needs and solutions, who paid for or provided materials, and who paid for or provided labor.

Results

Data were obtained for a total of 122 features in the homes of the 49 respondents, which had been modified during the respondent's residency. About half (53%) of the modifications were less than 5 years old.

The need for less than one-fourth (23%) of the modifications/accessible features was identified by the respondent. The need for the large majority had been identified by a family member (38.5%) or by someone outside the family (e.g., local health care and service providers) (36.1%). Materials/products needed to create 71% of the modifications/accessible features had been purchased and 29% had been donated. For those modifications/accessible features involving the purchase of materials/products, family and friends (67%), the respondent (17%), and someone outside the home (15%) or unknown (1%) had paid for these purchases. In the case of donated materials/products, the large majority (91%) were provided by service agencies. Labor to build or install over half (55%) of the modifications. For the remainder, labor was donated (e.g., community service project), was purchased for 25%, and 16% did not require labor to install (e.g., a tub stool). In about 10% of the cases the respondent did not know how labor costs were handled. Donated labor for individual modifications was provided by the respondent (4%), family/friends (54%), service providers (41%), and unknown (1%). Purchased labor for individual modifications was paid for by family/friends (3%) and service providers (93%).

In addition to respondent interviews, information about sources of assistance for accessible modifications for people with disabilities was collected for the two counties. Agreement existed among the agencies that services and resources are available to assist those who need assistance in acquiring home modifications or design feature enhancement. However, utilization of available services and resources is negatively affected by (1) lack of awareness by targeted audiences about services, (2) lack of information on how to apply for assistance, and (3) lack of coordination in the delivery of necessary services.

DISCUSSION

The results of this study suggest that different factors are critical to different components of the process of obtaining home modifications/accessible features in rural areas. Materials/products tended to be purchased and the individual with a disability was the most common source of payment. Labor tended to be obtained in a way that did not involve an outlay of money on the part of the individual with a disability. Family/friends were the most frequent source of no- cost labor. These results are consistent with anecdotal evidence from service programs in rural areas that monies to purchase materials and labor are limited, available funds are often used to obtain materials that may be too costly for individuals to afford (e.g., pressure treated lumber for ramps), and they must rely heavily on community and civic service groups to get the work done.

Other studies have found that reliance on volunteer groups and family members can result in variability in the craftsmanship of modifications, which may impact their usability and safety.(3) For example, the geometries involved in ensuring a ramp begins and ends at the desired points and level with the abutting surfaces may present difficulties for inexperienced, weekend carpenters. Technical information targeted to those with limited construction skills and limited experience in making modifications would help to address these needs. Additionally, documentation of service delivery programs that work, given the limited monies that are often available to purchase materials and provide labor, are needed. Finally, available services need to be better advertised. Some groups, such as older individuals with age-related disabilities, may be particularly disadvantaged in their awareness of available services to assist them in improving the accessibility and safety of their homes.

REFERENCES

1. Connell, B.R., J.A. Sanford, R.G. Long, C. Archea, and C.S. Turner Technology and Disability 2(4): 9-18, 1993.

2. Turner, C.S. and K.J. Gruber Proc American Assoc of Housing Educators Oct. 1994.

3. Connell, B.R. and Brad Bernier Proc RESNA 95 600-602, 1995.

ACKNOWLEDGMENTS

Funded by the National Institute of Disability and Rehabilitation Research Grant #H133B900003.

Bettye Rose Connell, PhD. Center for Universal Design, Box 8613 NCSU Raleigh, NC 27695 919/515-3082 (V)

Home Modification Process