Environmental Evaluations and Modifications to Support Aging at Home With a Developmental Disability

ABSTRACT

Increasing numbers of people with developmental disabilities are living into old age and are now residing in community-based housing, largely due to the deinstitutionalization movement. The overlay of age-related impairments onto pre-existing, lifelong disabilities puts this population at a magnified risk for premature behavioral limitations and loss of independence. This article describes a demonstration project designed to enable people with developmental disabilities to age in place. Interviews and observational assessments with 45 older adults with developmental disabilities were conducted in their community-based homes to identify potential barriers to aging in place. An Individualized Environmental Intervention Plan was developed for each study participant, recommending ways to solve problems and eliminate potential barriers. Individualized Environmental Intervention Plans were implemented to the extent possible through home modifications and assistive technology. Pre- and post-modification task performance and self-report revealed the positive impact that home modifications and assistive technology can have. The study demonstrates the need for ongoing evaluation and assessment sensitive to the needs of people with developmental disabilities and the unique characteristics of supported living settings.

KEYWORDS:

• Developmental disabilities
• home modifications
• environmental interventions
• aging in place

INTRODUCTION

The aging of America, which is drastically altering the demographic landscape of the country, also extends critically to persons with developmental disabilities. Current estimates vary the incidence of Americans older than 60 years of age with life-long disabilities from 4 or 5 per thousand people to 1 per hundred people (Ansello & Eustis, 1992). In terms of real numbers, it has been estimated that there are 526,000 adults older than 60 years with mental retardation (Heller & Factor, 2000).

Although there is a lack of consensus among experts on the estimates of the number of older people with developmental disabilities, there is widespread agreement that increasing numbers of people with developmental disabilities are living into old age (Bittles et al., 2002; Braddock, 1999; Brown, 1993; Janicki, 1996; McLoughlin, 1988; Salvatori, Tremblay, Sandys, & Marcaccio, 1998). Median life expectancy of persons with intellectual disabilities currently ranges between 58.6 and 74 years (Bittles et al., 2002). The average age of death for people with Down syndrome has increased from 9 years in the 1920s to 30.5 years in the 1960s to 55.8 years in 1993 (Braddock, 1999). Lifespan among adults with non-organic forms of intellectual disabilities has substantially increased over the past 50 years (Janicki, Dalton, Henderson, & Davidson, 1999). Although precise numbers are not available, McCallion and McCarron (2004) point out that in countries with national databases, such as Ireland, this longevity increase is seen as dramatic. They cite an increase of 368% from 1974 to 2002 in persons with intellectual disabilities between the ages of 35 and 54 and an increase of 249% in those older than 55. This increase is attributed to improvements in health care and living conditions (Brody & Ruff, 1986; Lubin & Kiely, 1985; McLoughlin, 1988; Sison & Cotton, 1989). There is also agreement that the impact of this demographic trend will only increase as the baby boomers age. Estimates project the number of older people with mental retardation at 1,065,000 by the year 2030 (Heller & Factor,2000).

Providing appropriately supportive housing for this cohort will present significant and on-going challenges. The overlay of age-related impairments onto pre-existing disabilities places older people with developmental disabilities at increased risk for accidents, restricted mobility, premature behavioral limitations, and loss of independence (Bigby, 1997; Mughal, 2000; Nochajski, 2000). These increased risks from the aging process can have a profound impact on where and how older persons with developmental disabilities live. Waiting lists for housing services are continually expanding and there is a strong need for residential options for a population with increasing functional limitations as people with disabilities age (Heller & Factor, 2000; Martinson & Stone, 1993).

An important goal for most older persons, regardless of disability status, is to remain in their homes and to be as safe, independent, productive, and integrated into the community as possible (AARP, 1996). A survey of older persons with developmental disabilities found that the majority also exhibited a preference to remain in their current homes as they aged rather than move to a setting that offered more supports (Olsen, Hutchings, & Ehrenkrantz, 1997). Researchers support aging in place when they question the suitability of nursing homes for people with intellectual disabilities (Heller, Factor, & Hsieh, 1998; Lakin, Hill, & Anderson, 1991; Uehara, Silverstein, Davis, & Geron, 1991).

However, social, medical, and environmental supports are needed as people age and limitations in physical and cognitive abilities increase to achieve the “aging in place” goal (Janicki, Knox, & Jacobson, 1989; Martinson & Stone, 1993; Pierce, 1992). Home modifications and assistive technologies are often required to provide the level of physical support necessary to maintain people in their own homes (Struyk, 1987). The physical environment has a direct impact on older people's ability to function safely, independently, and productively (Lanspery, Callahan, Miller, & Hyde, 1997; Lawton, 1970). Intervention research has shown that bathroom modifications can enhance overall activities of daily living performance and make tasks easier to perform (Gitlin, Miller, & Boyce, 1999). Modifications can also slow the decline in people with cognitive impairments, decrease problem behaviors, and have a positive impact on caregiving (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001). Modifications and assistive technologies in the home have also been associated with a slower rate of decline in function among the frail elderly (Mann, Ottenbacher, Fraas, Tomita, & Granger, 1999). Unlike the aging process or a life-long intellectual disability, neither of which can be reversed, the physical environment can be modified to ameliorate the negative impacts of both aging and disability. The emphasis should be on evaluating a person's cognitive, behavioral, and physical needs and modifying the environment to meet those needs. The Developmental Disability Aging at Home Project was conceived as a demonstration project to modify the environment of those aging with developmental disability so they can function optimally in both the present and future.

METHODS

Project Design

The overarching goal of this demonstration project was to develop and implement an environmental intervention plan that would enable older people with developmental disabilities to age in their current community-based homes. To achieve this goal, the research team developed a four-tier research and intervention strategy: 1) interviewing and assessing the home environments and functional abilities of a sample of 45 older adults with developmental disabilities; 2) developing Individualized Environmental Intervention Plans (IEIPs) that identified problems in the home and recommended ways to address them; 3) implementing the IEIPs to the greatest extent possible through physical interventions such as home modifications, repairs, and assistive technologies; and 4) evaluating the effectiveness of the home interventions.

With respect to the home modification implementation strategy, there were two funding sources with two different catchment areas. Performing interventions was somewhat challenging due to the dual funding streams of this project. The larger funding source provided for a modification stipend for consumers living in the area it served. Consequently, there was funding for modifications for two-thirds of the sample whereas the remaining one-third had to rely on their agency's normal operating budget to pay for any improvements. This limited the number of modifications that could be implemented for these consumers. The budget for each fundable consumer was $600. However, if there was more than one consumer per setting, then these individual stipends were aggregated. For example, if two consumers in the study shared an apartment, then there was $1,200 allocated for modifications to that property.

Project Sample

The sampling strategy for the Developmental Disability Aging at Home Project was purposeful. Three local provider agencies were identified (ARC of Union County, ARC of Essex County and JESPY House) and agreed to participate in the study. Consumers were recruited by agency staff according to their age, need, and their willingness (and their guardian's willingness, when applicable) to participate in the project. Despite these selection criteria, the resulting sample was primarily comprised of the “young” old. The mean age of 46 sample members was 50.9 years. Twenty-two percent were 60 years or older. The sample exhibited a fairly close distribution by sex with 54% of the sample being male. The housing environments of the study sample reflected the dwellings of the developmentally disability population who receive housing services, with 78% of participants residing in group homes. Table 1 contains demographic details.

TABLE 1 Demographic Characteristics of Sample (N = 46)

Variables	Mean (SD)	n (%)
Age	50.9
<50 years		23 (50)
50–59 years		13 (28)
60–69 years		6 (13)
>70 years		4 (9)
Sex
Male		25 (54)
Female		21 (46)
Housing Environments
Group homes		36 (78)
Supported apartments		10 (22)
SD = standard deviation.

The disability characteristics of the study sample can be found in Table 2 and included both intellectual and physical disabilities. Seventy-six percent (n = 35) of the consumers had life-long intellectual disabilities, with 13% of the sample (n = 6) experiencing both physical and intellectual developmental disabilities.

TABLE 2 Disability Characteristics of Sample (N = 46)¹

Characteristics	n (%)
Lifelong intellectual disabilities	35 (76)
Both physical and intellectual disabilities	6 (13)
Physical impairment originating from cerebral palsy, dysautomonia, or muscular dystrophy	4 (9)
Dementia	1 (2)
Required mobility devices	11 (24)
Required wheelchair as only method of mobility	3 (7)
^1Ss could display more than one disability characteristic.

Procedures

Each consumer in the study was visited a minimum of three times. During the first visit the consumers or their staff proxy or spokesperson were interviewed and the functional and environmental assessments were conducted. Additional visits were made to the housing sites when an interview or assessment could not be conducted in one contact. The second visit focused on the home modification recommendations that were developed in the IEIP. A meeting was conducted with the consumer's residential staff, consumer, additional consumers who also lived at the residence, and agency representatives. During this session, an appropriate and affordable intervention strategy was agreed on and the modifications were then made by the agency responsible for the consumer's housing. The research team often met with an agency's personnel on several occasions to review assessments and facilitate the progress of the project. The impact of the home modifications that were implemented was evaluated on the final visit. This post-assessment time frame was completed ideally at approximately 6 weeks after the modifications were made to give the consumers time to use the modifications. This assessment varied due to the time it took a given agency to complete the modifications. For purposes of inter-rater reliability, it is noted that the interviewer for all consumers for pre- and post-assessments was the same person. Two interviewers were used, an architect who was also a social worker and an occupational therapist with a specialty in environments and public health. Both interviewers trained together until a high level of inter-rater reliability was achieved.

Instrumentation

It was necessary that the measures used in the study be responsive to the characteristics of adults with developmental disabilities, geared to assessing the need for changes in, or modifications to, the physical environment, and aimed at assessing the congruence of the physical environment of the home with those residing there. Because there were no measurement instruments available that met these criteria, existing instruments designed for rehabilitative and geriatric assessment were reviewed and used to develop measures specific to the study's goals. The assessment instruments that were reviewed and used include: The Gerontologic Environmental Modification Assessment Forms, developed by Rosemary Bakker at the Weill Medical College of Cornell University. This instrument was developed for elders who are undergoing the normal process of aging, with the goal of improving home safety (Robinson, 2001); the Telerehabilitation Housing Assessment Tool (Sanford & Butterfield, 2005), a comprehensive housing inventory; the Canadian Mortgage and Housing Corporation (CMHC, 1996–2008) Assessment form: Maintaining Seniors’ Independence Through Home Adaptations, which was developed to enable frail older people to undertake daily activities more independently; and the Philadelphia Corporation for Aging Housing Department Occupational Therapy Evaluation (Klein, 2000). The final instrument has not been standardized.

Because of the varied intellectual and communicable skills of the study subjects, the research protocol included both interview and observational instruments. During the interview component (Consumer Interview), consumers were asked to describe any problems they encountered while performing basic activities of daily living or instrumental activities of daily living, and using the physical environments both inside and outside their homes. When consumers lacked the intellectual or communicable abilities necessary to participate in an interview, direct care staff was interviewed on their behalf and in their presence. For all consumers, staff was present during the interviews and participated in the interviews to varying degrees. The initial interview and observational instruments took 1 to 2 hours. For some consumers, there were some items that were not asked of the consumer due to the structural nature of the residence (e.g., agency policy that residential staff does the consumer's laundry). Additionally, if a consumer appeared or expressed fatigue, the interviewer returned on another day.

In the direct observational instrument (Task/Environmental Assessment), consumers were asked to perform or simulate over 65 basic activities of daily living and instrumental activities of daily living in a “show me how you do this” format. For example, consumers were asked to demonstrate how they walk up the front steps and open the door, how they make a cup of tea or coffee, how they climb out of bed, how they climb into a bathtub or shower, how they turn on the light by their bed, and how they open their bedroom window. This aspect of the assessment was particularly important because many consumers lacked the cognitive or verbal skills necessary to recognize and describe problems encountered while using their home environments. Task performance was rated on a five-point scale (where 1 = performs task easily with no problem; 2 = has minimal difficulty; 3 = has moderate difficulty; 4 = has great difficulty; and 5 = unable to perform task). Additionally, during these functional assessments, the researcher also recorded any actual or potential safety problems observed in the home environment. These problems might include conditions such as steps without hand rails, poor lighting, high door saddles, and other accessibility barriers.

Individual Environmental Intervention Plans

Based on the Consumer Interviews and the Task/Environmental Assessments, IEIPs were developed for each consumer. The IEIPs described the problems noted in the home and during the task performance assessments and made recommendations for addressing these problems through home modifications, assistive technologies, or a reorganization of the environment (e.g., eliminating a throw rug or mat, reconfiguring storage, or installing shelves so clutter could be removed from the floor or window sill).

Post-Modification Assessment

This assessment incorporated both interview evaluation questions and direct observation and was used for follow-up evaluation on those modifications that had been made. For each modification, the consumers were asked a brief series of questions about the modification and were asked to rate the modification on a scale from 1 to 5, with 1 meaning that the modification works well and helps a lot and 5 meaning that the modification doesn't work well and the consumer liked it better the way it used to be. The consumer was also asked to demonstrate using the modification and was rated by the researcher as to how well it worked for the consumer.

Analysis

The purpose of this quantitative analysis is exploratory in nature. Univariate statistics were calculated to describe the sample and summarize changes in data.

RESULTS

Problem Identification

The assessments revealed that many consumers experienced problems performing tasks in their home environments that either did or had the potential to compromise safety, convenience, and independence. Examples of tasks that were performed with moderate or great difficulty or could not be performed at all by more than 15% of the consumers included hanging up a coat, entering or exiting through a second or third outside door (not the primary entrance), climbing or descending stairs, retrieving an item from the bottom bureau drawer, taking an item down from their closet shelf, and retrieving an item from a kitchen cabinet. Appendix A: Task Assessment Response provides details by item of task difficulty. Appendix B: Missing Data per Variable/Task provides details by item of missing data.

Environmental Interventions

A total of 397 modifications were recommended for 27 group homes and apartments. Of these, 267 (69%) modifications were implemented at 24 different sites. Cost was the preeminent reason for non-implementation. However, some recommendations were not implemented because landlords would not approve them, zoning or fire regulations made them illegal, the provider agency or consumers did not want them, or the recommendation was not deemed a priority at the time.

The modifications that were implemented addressed a wide array of issues both inside and outside of the dwelling (Table 3). Exterior modifications included changes to increase accessibility and independence, decrease obstacles, and improve safely. For example, driveways and walkways were added, widened, or repaved, mailboxes were lowered< bushes were pruned back from walkways, and decks were added to provide a safe, easily accessible outdoor area. Existing and potential obstacles to home entry and egress were also prevalent. Doors were planed to swing more smoothly; mats that impeded door opening or presented a tripping hazard were removed or replaced with non-skid mats; easy-to-grip hand railings were added to steps; doorbells were relocated; and doorsills were lowered or removed.

TABLE 3 Frequency and Percent of Modification by Type

Modification type	Frequency	Percent
Outdoors	35	13.1
Entries/exits	51	19.1
Living room	9	3.4
Dining room	7	2.6
Kitchen	15	5.6
Bathroom	52	19.5
Laundry	6	2.2
Bedroom	30	11.2
Stairs	33	12.4
Other	29	10.9
Total	267	100.0

More modifications were made in the bathroom than in any other area of the home. Changes included adding grab bars and replacing towel racks with grab bars, adding non-slip mats, installing anti-scald devices on faucets and adjustable height, hand-held showerheads, improving lighting in the shower, and lowering medicine cabinets that were out of reach.

Lighting was a major issue throughout the home. This was particularly true in consumers’ bedrooms, where light levels were enhanced and switches and outlets were added or relocated to improve accessibility. In addition to lighting, environmental concerns in the bedrooms also focused on problems with clutter, closets, and storage. Modifications to address these issues included providing shelves and additional furniture for storage and lowering closet poles and shelves to make clothing more accessible. Stairways also received a substantial degree of attention. Stairs were modified by adding one or two new railings, tightening existing railings, removing obstacles that impeded access, and improving lighting.

Kitchens received comparatively few modifications. However, this was not because they were safe and accessible but because meal preparation was usually handled by staff. Modifications that did occur included adding shelving and storage, lowering cabinets, modifying faucets to make them easier to use, and improving lighting. Relatively few changes were also made to living and dining rooms. These areas were less likely to pose safely problems. When modifications were made to these rooms, they focused on improving illumination levels and access to light switches.

Modification Evaluation

Interventions were evaluated through consumer interviews and by repeating the task performances post-modification. When consumers were unable to participate in an interview due to cognitive or verbal limitations, staff was again used as proxies. For each modification, consumers were asked “What do you think about this modification?” A total of 267 modifications were made; however, only 216 modifications could be evaluated. Modifications were not included in the analysis when a consumer was unaware that a change had been made or unable to respond to all of the questions. Verbal evaluations were positive with consumers responding positively to 85.6% (n = 185) of the modifications. When asked “Do you think this modification will help you as you get older?” consumers responded positively to 77.3% (n = 167) of the modifications (Table 3).

In both the assessment and the evaluation phases of the study, there was concern about the reliability of responses from consumers with life-long intellectual disabilities. This is why the “show me how you do this” method was added to the research protocol both before and after the study. Consumers were asked to repeat the tasks that involved the use of the modifications. This was the most important outcome indicator in the study because it allowed the researchers to judge whether potentially difficult or dangerous tasks were now easier or safer to perform.

This evaluation found that when consumers were asked to perform a task that incorporated the use of the modification, they were either able to accomplish this task without difficulty or they were able to perform the component of the task that the modification addressed. There were instances when the modification was implemented to prevent a future or potential problem rather than an existing one (n = 24). For example, electrical cords were removed from floors because someone might trip over them and steps of uneven heights were made more uniform before someone fell. There were also times when consumers refused to perform the task, did not realize that a change had been made, were unable to execute the task, or ignored the modification (n = 24). When these categories were eliminated from the response data, there were 219 task performances left to analyze. This analysis indicated that, after modification, 204 (93.2%) tasks were performed or partially performed without difficulty, 11 (5.1%) tasks were performed with some difficulty, and 4 (1.8%) tasks could not be performed at all.

Pre- and Post-Performance Comparisons

Although these findings were highly encouraging, the researchers were also interested in knowing whether the modifications actually improved consumer task performance. To answer this question, pre- and post-comparisons of the task assessment data were performed. During the pre- and post-task assessments, each consumer's performance of each task was rated by the observer on the 5-point scale described above. These performance assessments were then compared to see whether there had been a change in the consumers’ abilities to complete specific tasks. These comparison ratings were then divided into two groups: Total Task Improvement and Partial Task Improvement. Total Task Improvements included modifications that made performance of a specific task possible and Partial Task Improvements were modifications that made a component of a specific task possible but did not make the entire task possible. For example, a consumer is having difficulty going through the front door because she cannot use the door handle and the saddle is too high for her wheelchair to glide over. The saddle is removed and she can now roll over the threshold without any difficulty, but she still cannot open the door because she has minimal use of her hand and cannot grasp the lever door handle. In this situation, the task “going through the front door” was partially improved.

Pre- and post-assessment task comparisons indicated that either partial or total task improvement occurred during 40% (n = 71) of the rating comparisons (Table 4). For the 85 (47.5%) observations in which the task performance rating remained constant, data were re-analyzed to determine the performance levels at which these comparisons were constant. These findings indicate that in 90.6% (n = 77) of observations, task performance remained high at level 1 (tasks were performed easily and without problems). In four (4.7%) observations, task performance remained at level 2 (tasks were completed with minimal difficulty). This occurred when a modification had been implemented incorrectly, such as when a closet pole was lowered but was not lowered enough. In one (1.2%) observation, the subject had moderate difficulty completing the task (level 3). In this case, a grab bar that was recommended to replace a towel rack that the subject was using for support had been installed in addition to the towel rack. The grab bar was then placed too high on the wall and it was awkward to reach. Finally, in three (3.5%) cases, task performance remained at level 5 (tasks were unable to be completed). In these cases, some other recommended modification that was related to completing the task had not been implemented. This precluded the completion of any component of the task by these subjects.

TABLE 4 Consumer Interview Post-Modification Responses (N = 216)

	Positive	Neutral	Negative	Don't Know/No
Question	n (%)	n (%)	n (%)	Response n (%)
What do you think about this modification?	185 (85.6)	21 (9.7)	7 (3.2)	3 (1.4)
				Don't Know/No
	Yes		No	Response
	n (%)		n (%)	n (%)
Do you think this modification will help you as you get older?	167 (77.3)		12 (5.6)	37 (17.2)

TABLE 5 Post-Modification Task Ability from Pre-Modification (N = 179)

Task Ability	n (%)
Total Task Improvement	44 (24.6)
Partial Task Improvement	27 (15.1)
Ability Remained Constant	85 (47.5)
Ability Decreased	1 (0.6)
Refused	9 (5.0)
Ignored/Incorrect	7 (3.9)
Missing	5 (2.8)

Although a significant degree of the task performances were constant before and after the intervention, it is important to note that most remained at a high level of performance. This high level of functioning can be attributed to the fact that many modifications were proactive interventions to preclude future problems rather than to address current difficulties.

TABLE 6 Performance Levels of Constant Pre-Post Modification Comparisons (N = 85)

Task Performance	n (%)
Level 1: easily, without problems	77  (90.6)
Level 2: with minimal difficulty	4  (4.7)
Level 3: with moderate difficulty	1  (1.2)
Level 4: with maximal difficulty	—
Level 5: unable to complete	3  (3.5)

DISCUSSION

Age of the Study Sample

Although the original goal of the study was to improve home safety and independent functioning for frail people with a developmental disability who are aging, the reality was that the participating agencies did not provide services to enough consumers who fit this profile (half of the study sample was under the age of 50). Although many of the subjects had physical disabilities that impeded their functional ability, several subjects were not yet exhibiting age-related declines and their ability to negotiate their home environments was not significantly compromised. Because the goal of the study was to identify current and future obstacles to aging in place, the research team identified features of the home environment that could potentially pose problems as these physically competent consumers age and experience the declines associated with aging. This future planning was conceptualized as an integral part of the study due to the growing number and unique needs of people who are aging with preexisting disabilities. Several staff from the collaborating agencies theorized that people with disabilities age faster and take longer to learn environmental coping strategies once their functioning has become compromised. As a result, some environmental modifications should be made for people with intellectual disabilities before they become frail. This extended lead time will give aging consumers the opportunity to learn how to use the modifications before they actually need them.

Project Benefits

The Developmental Disability Aging at Home project provided three immediate benefits. Primary among the beneficiaries were the participants, who emerged with safer, more accessible and user-friendly home environments. The modifications that were implemented improved consumers’ performance on several routine but essential everyday tasks and consumers felt that these modifications would help them as they aged.

Second, the project gave participating provider agencies a leveraging tool that they used to obtain internal and external funding for home modifications. For example, one agency used the assessments as objective and independent evidence of the need for a ramp in one of their group homes. The agency developed a proposal based on this evidence and obtained funding from a local foundation to build the ramp. Another agency took the assessments and successfully lobbied their board of directors to approve monies for additional home modifications. These “extra-project” modifications will provide direct benefits to consumers.

Third, the project increased agency awareness of the environmental needs of their aging consumers. For example, although the need for wide doorways for people in wheelchairs is fairly obvious, inadequate or inaccessible lighting may go unnoticed by facility directors. However, illumination deficiencies can have a significant impact on consumers with age-related vision loss. This impact can be even more pronounced for consumers who can verbalize the fact that they are now having difficulty seeing. All three agencies reported that that their participation in the study enhanced their sensitivity to more subtle environmental issues and how to respond to them effectively. This heightened sensitivity and responsiveness will benefit all consumers in the agencies’ residential programs.

Study Limitations

Although the project had several benefits, it was not immune to problems. A difficulty that the research team faced was the time it took to implement the modifications. Given the difficulty every homeowner experiences in locating and scheduling contractors, especially for a series of small-scale projects, this was not surprising. However, it did delay the project, especially at the concluding stages. It also significantly shortened the “settling in” period, when consumers were expected to become accustomed to and learn how to use the modifications. The fact that the post-modification evaluations were often completed several weeks after the interventions had been made undoubtedly compromised some of the post-modification assessments.

Another related problem was that some modifications were not implemented properly. During this study, the problem was addressed by the researchers’ direct oversight of some of the modifications. This task, however, was not one that was anticipated or for which time or money had been allocated. For future studies, the researchers would recommend hiring a home modification coordinator to act as a liaison between the researchers and the contractors. The coordinator should have home modification and repair skills and knowledge of the needs of people with disabilities to insure that the IEIP recommendations were accurately understood and implemented properly.

There were also sampling challenges. Researchers have noted the difficulty in identifying, accessing, and recruiting adults with developmental disabilities as research subjects for both medical and non-intrusive psychological and behavioral research studies (Beange, McElduff, & Baker, 1995; Lennox, Beange, & Edwards, 2000; Lennox et al., 2005; Siegal & Ellis, 1985). Problems identifying and recruiting minority and at-risk populations have been well-documented (Anderson, Fogler, & Dedrick, 1995; Lewis et al., 1998; Neufeld et al., 2001). Difficulties gathering samples of people with intellectual disabilities in particular have been attributed to substituted decision making and obtaining guardian or parental consent, the limited literacy of the population, anti-intellectualism and insistence on immediate application, the threat of litigation against service providers, and organizational gate-keeping practices (Lee, 1993; Lennox et al., 2005; Siegel & Ellis, 1985).

Difficulties are less apt to be encountered when the researcher has access to a captive pool, such as institutionalized persons or clients of a state-wide human services agency (Siegal & Ellis, 1985). However, for the independent or university researcher, recruitment is often dependent on the goodwill of organizations (Lennox et al., 2005). Researchers not only need the consent of an organization's senior staff, but they also need more than token cooperation from subordinates (Lee, 1993). Because many staff at community provider organizations has complex and overwhelming workloads, research may not be their priority or concern (Lennox et al., 2005). Likewise, familial caregivers of adults with developmental disabilities, often their elderly parent(s), are likely to find the daily challenges associated with caregiving and their own age-related limitations overwhelming and simply lack the energy to participate in activities that are not essential to their daily well-being (Lennox et al., 2005; Schofield et al., 1999; Todd & Shearn, 1996).

Because many of the members of this population are not their own guardians, dual consent is necessary—first from the research participant, when possible, and second from a guardian or parent. The fact that this person often does not play a role in the daily activities of the person they are charged to protect can further complicate and delay the consent process (Lennox et al., 2005). If adults with developmental disabilities live with their families and have not accessed ongoing funding or support, such as Medicaid or Supplemental Security Income, they are likely to be unknown to service provider organizations and “invisible” (Lennox et al., 2005). Finally, ethical limitations prevent the direct recruitment of potential participants. Although this safeguard protects this population from the possibility of harm through researcher abuse, as Lennox et al. (2000) point out, it may inadvertently deny them their rights to be included as research participants.

A final limitation is related to the population under study and response data. People with developmental disabilities often have communication impairments. Subjects with intellectual disabilities are notoriously verbally unforthcoming, may respond according to what they perceive as the researcher's expectations rather than according to their own experience and, in cases of severe or profound mental retardation, may be incapable of a meaningful verbal response. People with physical developmental disabilities, such as cerebral palsy, may have muscular impairments that make it difficult and frustrating for them to speak. This also renders their speech unintelligible to varying degrees. In these cases, the researcher is left to guess what the subject is trying to communicate or to rely on an interpreter who is more familiar with the subject's verbal quirks and nuances but who inevitably comes into the situation with their own preconceptions and prejudices. It is this researcher's opinion that some subjects, finding themselves in these situations, acquiesce to a meaning close to but less than that originally intended either in sheer frustration (“how can this researcher be so dense?”), in embarrassment at what they perceive as their own inadequacies, in the interest of expediting what is proving to be an arduous task, or a combination of all three.

CONCLUSION

This demonstration project systematically investigated physical residential environments in a growing population that is currently understudied in this area. Despite the limitations discussed earlier of doing research with this population, the study demonstrated several benefits. The project demonstrated the need for ongoing evaluation and assessment of the degree of fit between consumers and their physical environments. It also demonstrated that even minor, low-cost changes can have a positive impact on consumers’ safety, autonomy, and independence. If consumers are to age in place as safely and independently as possible, service providers need to develop comprehensive plans for home adaptations that are sensitive to both the unique needs of people with developmental disabilities and the special characteristics of supported living settings. Additionally, a methodology was developed to address those who cannot adequately verbalize their needs. Specifically, caregivers and clients were interviewed and then the clients were asked to demonstrate how they performed the activities of interest in their actual environment. Thus, it was clear to see how successful the interventions and modifications were for these clients.

The task now is to extend this research and develop consumer-based design guidelines that can be modified on an individual basis. The ready availability of assessment tools and guidelines for people with developmental disabilities, their families, friends, and caregivers will do much to enable those aging with intellectual impairments to do so in the comfort of their homes as safely and independently as possible. The aging process cannot be stopped and life-long disabilities cannot be reversed. However, the physical environment can be adapted to support consumers’ existing abilities rather than limit them.

APPENDIX A Task Assessment Response

	Valid		Missing		Easy, No Problems		Minimal Difficulty		Moderate Difficulty		Great Difficulty; Needs Assistance		Can't Do
Directive	N	%	N	%	N	%	N	%	N	%	N	%	N	%
Go from driveway/parking area to your front door.	127	98.4	2	1.6	92	71.3	17	13.2	4	3.1	7	5.4	7	5.4
Open it and go into the house or apartment.	129	100.0	0	—	103	79.8	13	10.1	4	3.1	3	2.3	6	4.7
Once inside your house, turn on a light.	125	96.9	4	3.9	103	79.8	14	10.9	0	—	1	.8	7	5.4
Hang up your coat.	120	93.0	9	7.0	90	69.8	16	12.4	2	1.6	2	1.6	10	7.8
Walk from driveway/parking area to a [back/side] door.	103	79.8	26	20.2	73	56.6	13	10.1	6	4.7	4	3.1	7	5.4
Climb up and down the stairs	85	65.9	44	34.1	50	38.8	16	12.4	14	10.9	1	.8	4	3.1
Take your laundry from the bedroom to the laundry room.	84	65.1	45	34.9	56	43.4	15	11.6	7	5.4	0	—	6	4.7
Put your laundry in the washer	86	66.7	43	33.3	79	61.2	1	.8	1	.8	1	.8	4	3.1
Pretend to pour detergent into the washer	82	63.6	47	36.4	69	53.5	5	3.9	0	—	1	.8	7	5.4
Pretend to turn the washer on (set the dial)	80	62.0	49	38.0	70	54.3	3	2.3	0	—	1	.8	6	4.7
Take the wash out of the washer and put it in the dryer	84	65.1	45	34.9	77	59.7	1	.8	1	.8	1	.8	4	3.1
Pretend to turn the dryer on	79	61.2	50	38.8	71	55.0	1	.8	1	.8	1	.8	5	3.9
Take laundry out of dryer and fold 1 or 2 items	83	64.3	46	35.7	74	57.4	1	.8	3	2.3	0	—	5	3.9
Take the laundry back to your room	78	60.5	51	39.5	60	46.5	6	4.7	7	5.4	0	—	5	3.9
Get out and set up the ironing board and iron.	18	14.0	111	86.0	11	8.5	3	2.3	1	.8	0	—	3	2.3
Iron one small item.	21	16.3	108	83.7	16	12.4	1	.8	0	—	0	—	4	3.1
Put the ironing board and iron away.	19	14.7	110	85.3	10	7.8	3	2.3	1	.8	0	—	5	3.9
Get something from your bottom bureau drawer and then put it back.	120	93.0	9	7.0	90	69.8	15	11.6	5	3.9	2	1.6	8	6.2
Get something out of your top bureau drawer and put it back.	122	94.6	7	5.4	107	82.9	6	4.7	4	3.1	1	.8	4	3.1
Get something hanging in your closet and then put it back.	124	96.1	5	3.9	82	63.6	28	21.7	2	1.6	1	.8	11	8.5
Get something down from a shelf in your closet and put it back.	120	93.0	9	7.0	51	39.5	25	19.4	15	11.6	2	1.6	27	20.9
Take your shoes off and put them away. Put your shoes back on.	114	88.4	15	11.6	100	77.5	7	5.4	0	—	1	.8	6	4.7
Get onto your bed and lie down.	122	94.6	7	5.4	110	85.3	6	4.7	0	—	0	—	6	4.7
Get up off the bed.	122	94.6	7	5.4	112	86.8	4	3.1	0	—	0	—	6	4.7
Open and close a bedroom window	94	72.9	35	27.1	63	48.8	10	7.8	0	—	2	1.6	19	14.7
Go to the bathroom turn on a light.	126	97.7	3	2.3	119	92.2	4	3.1	0	—	0	—	3	2.3
Brush your teeth.	111	86.0	18	14.0	101	78.3	3	2.3	2	1.6	0	—	5	3.9
Step into the bathtub or shower.	111	86.0	18	14.0	59	45.7	33	25.6	12	9.3	3	2.3	4	3.1
Pretend to turn on/off the bathtub/shower faucet.	113	87.6	16	12.4	102	79.1	2	1.6	3	2.3	0	—	6	4.7
Take your towel and pretend to dry yourself.	108	83.7	21	16.3	91	70.5	6	4.7	2	1.6	1	.8	8	6.2
Sit down on the toilet and tear off a small piece of toilet tissue.	124	96.1	5	3.9	100	77.5	15	11.6	2	1.6	1	.8	6	4.7
Get up off the toilet.	124	96.1	5	3.9	105	81.4	9	7.0	4	3.1	0	—	6	4.7
Flush the toilet.	124	96.1	5	3.9	118	91.5	0	—	0	—	0	—	6	4.7
Go from the bathroom to the kitchen.	127	98.4	2	1.6	117	90.7	7	5.4	0	—	0	—	3	2.3
When we get to the kitchen, turn on a light.	126	97.7	3	2.3	121	93.8	2	1.6	1	.8	0	—	2	1.6
Go to the sink and wash your hands.	125	96.9	4	3.1	114	88.4	4	3.1	0	—	0	—	7	5.4
Dry them on a hand towel or paper towel.	124	96.1	5	3.9	115	89.1	1	.8	1	.8	0	—	7	5.4
Set a place setting at the table.	111	86.0	18	14.0	75	58.1	19	14.7	4	3.1	1	.8	12	9.3
Fill a glass with water.	118	91.5	11	8.5	104	80.6	4	3.1	1	.8	0	—	9	7.0
Bring the glass to the place you set at the table.	112	86.8	17	13.2	100	77.5	3	2.3	1	.8	0	—	8	6.2
Get something from the refrigerator; put it on a plate.	116	89.9	13	10.1	105	81.4	4	3.1	1	.8	0	—	6	4.7
Sit down at the table and get back up again.	123	95.3	6	4.7	113	87.6	2	1.6	4	3.1	1	.8	3	2.3
Put the food back in the refrigerator.	115	89.1	14	10.9	105	81.4	2	1.6	1	.8	0	—	7	5.4
Move the dishes from the table to the sink.	112	86.8	17	13.2	100	77.5	1	.8	0	—	0	—	11	8.5
Wash/rinse a dish and put it in the dish drainer or dishwasher.	109	84.5	20	15.5	93	72.1	3	2.3	1	.8	1	.8	11	8.5
Take a dish out of the dish drainer or dishwasher and put it away.	107	82.9	22	17.1	89	69.0	3	2.3	3	2.3	0	—	12	9.3
Get a saucepan, fill it with water, put it on the stove.	69	53.5	60	46.5	56	43.4	3	2.3	2	1.6	0	—	8	6.2
Turn on the stove and adjust the heat from low to high. Turn off the stove.	67	51.9	62	48.1	56	43.4	3	2.3	3	2.3	0	—	5	3.9
Stir the water in the pot with a spoon.	67	51.9	62	48.1	61	47.3	0	—	0	—	0	—	6	4.7
Move the pot from the stove to the counter.	61	47.3	68	52.7	52	40.3	1	.8	0	—	0	—	8	6.2
Take the pot to the sink and pour out the water.	68	52.7	61	47.3	61	47.3	1	.8	0	—	0	—	6	4.7
Dry off the pot with a towel.	71	55.0	58	45.0	63	48.8	2	1.6	0	—	0	—	6	4.7
Go from the kitchen into the living room/TV room.	127	98.4	2	1.6	120	93.0	4	3.1	1	.8	0	—	2	1.6
Turn on a light.	124	96.1	5	3.9	111	86.0	5	3.9	1	.8	1	.8	6	4.7
Open a living room window.	90	69.8	39	30.2	63	48.8	4	3.1	1	.8	2	1.6	20	15.5
Sit down.	125	96.9	4	3.1	105	81.4	9	7.0	4	3.1	0	—	7	5.4
Turn on the TV.	110	85.3	19	14.7	102	79.1	1	.8	0	—	0	—	7	5.4
Put a tape in the VCR.	62	48.1	67	51.9	45	34.9	2	1.6	0	—	0	—	15	11.6
Walk from the living room to the front door.	114	88.4	15	11.6	104	80.6	4	3.1	2	1.6	1	.8	3	2.3
Dial [a specific number] on the telephone.	83	64.3	46	35.7	67	51.9	6	4.7	0	—	1	.8	9	7.0
Go to the mailbox, get the mail and put it in the appropriate place.	96	74.4	33	25.6	82	63.6	4	3.1	1	.8	1	.8	8	6.2

APPENDIX B Missing Data Per Variable/Task

	Irrelevant		Not Asked		Don't Do		Refused		Total Missing
Directive	N	%	N	%	N	%	N	%	N	%
Go from driveway/parking area to your front door	0	—	1	.8	0	—	1	.8	2	1.6
Open it and go into the house or apartment	0	—	0	—	0	—	0	—	0	—
Once inside your house, turn on a light	0	—	0	—	1	1.6	3	2.3	4	3.1
Hang up your coat	3	2.3	2	1.6	1	.8	3	2.3	9	7.0
Walk from driveway/parking area to a [back/side] door	20	15.5	1	.8	1	.8	4	3.1	26	20.2
Climb up and down the stairs.	37	27.9	0	—	6	4.7	1	.8	44	34.1
Take your laundry from the bedroom to the laundry room.	11	8.5	2	1.6	27	20.2	5	3.9	45	34.9
Put your laundry in the washer.	9	7.0	4	3.1	24	17.8	6	4.7	43	33.3
Pretend to pour detergent into the washer.	9	7.0	3	2.3	29	22.5	6	4.7	47	36.4
Pretend to turn the washer on (set the dial).	10	7.8	4	3.1	29	22.5	6	4.7	49	38.0
Take the wash out of the washer and put it in the dryer.	11	8.5	6	4.7	23	17.8	5	3.9	44	34.9
Pretend to turn the dryer on.	11	8.5	4	3.1	30	23.3	5	3.9	50	38.8
Take laundry out of dryer and fold 1 or 2 items.	10	7.8	5	3.9	23	17.8	8	6.2	46	35.7
Take the laundry back to your room.	10	7.8	4	3.1	29	22.5	8	6.2	51	39.5
Get out and set up the ironing board and iron.	12	9.3	3	2.3	94	72.9	2	1.6	111	86.0
Iron one small item.	10	7.8	3	2.3	93	72.1	2	1.6	108	83.7
Put the ironing board and iron away.	12	9.3	3	2.3	93	72.1	2	1.6	110	85.3
Get something from your bottom bureau drawer and then put it back.	1	.8	0	—	3	2.3	5	3.0	9	7.0
Get something out of your top bureau drawer and put it back.	1	.8	0	—	2	1.6	4	3.1	7	5.4
Get something hanging in your closet and then put it back.	0	—	0	—	3	2.3	2	1.6	5	3.9
Get something down from a shelf in your closet and put it back.	1	.8	0	—	3	2.3	5	3.0	9	7.0
Take your shoes off and put them away. Put your shoes back on	1	.8	3	2.3	1	.8	10	7.8	15	11.6
Get onto your bed and lie down.	0	—	1	.8	0	—	6	4.7	7	5.4
Get up off the bed.	0	—	1	.8	0	—	6	4.7	7	5.4
Open and close a bedroom window	2	1.6	1	.8	16	12.4	16	12.4	35	27.1
Go to the bathroom turn on a light.	1	.8	0	—	0	—	2	1.6	3	2.3
Brush your teeth.	14	10.9	0	—	1	.8	3	2.3	18	14.0
Step into the bathtub or shower	1	.8	7	5.4	0	—	10	7.8	18	14.0
Pretend to turn on/off the bathtub/shower faucet	0	—	2	1.6	9	7.0	5	3.9	16	12.4
Take your towel and pretend to dry yourself.	0	—	1	.8	6	4.7	14	10.9	21	16.3
Sit down on the toilet and tear off a small piece of toilet tissue.	0	—	1	.8	0	—	4	3.1	5	3.9
Get up off the toilet.	0	—	1	.8	0	—	4	3.1	5	3.9
Flush the toilet.	0	—	1	.8	0	—	4	3.1	5	3.9
Go from the bathroom to the kitchen.	0	—	0	—	0	—	2	1.6	2	1.6
When we get to the kitchen, turn on a light.	0	—	0	—	0	—	3	2.3	3	2.3
Go to the sink and wash your hands.	0	—	0	—	0	—	4	3.1	4	3.1
Dry them on a hand towel or paper towel.	0	—	1	.8	0	—	4	3.1	5	3.9
Set a place setting at the table.	1	.8	0	—	10	7.8	7	5.4	18	14.0
Fill a glass with water.	0	—	0	—	7	5.4	4	3.1	11	8.5
Bring the glass to the place you set at the table.	1	.8	2	1.6	9	7.0	5	3.9	17	13.2
Get something from the refrigerator; put it on a plate.	1	.8	0	—	9	7.0	3	2.3	13	10.1
Sit down at the table and get back up again.	1	.8	0	—	3	2.3	2	1.6	6	4.7
Put the food back in the refrigerator.	1	.8	0	—	9	7.0	4	3.1	14	10.9
Move the dishes from the table to the sink.	1	.8	2	1.6	10	7.8	4	3.1	17	13.2
Wash/rinse a dish and put it in the dish drainer or dishwasher.	1	.8	2	1.6	11	8.5	6	4.7	20	15.5
Take a dish out of the dish drainer or dishwasher and put it away.	1	.8	3	2.3	13	10.1	5	3.9	22	17.1
Get a saucepan, fill it with water, put it on the stove.	1	.8	1	.8	55	42.6	3	2.3	60	46.5
Turn on the stove and adjust the heat from low to high. Turn off the stove.	1	.8	1	.8	58	45.0	2	1.6	62	48.1
Stir the water in the pot with a spoon.	1.8	.8	1	.8	57	44.2	3	2.3	62	48.1
Move the pot from the stove to the counter.	3	2.3	3	2.3	58	45.0	4	3.1	68	52.7
Take the pot to the sink and pour out the water.	1	.8	2	1.6	56	43.4	2	1.6	61	47.3
Dry off the pot with a towel.	2	1.6	3	2.3	50	38.3	3	2.3	58	45.0
Go from the kitchen into the living room/TV room.	0	—	0	—	2	1.6	0	—	2	1.6
Turn on a light.	0	—	0	—	2	1.6	3	2.3	5	3.9
Open a living room window.	2	1.6	2	1.6	16	12.4	20	15.5	39	30.2
Sit down.	1	.8	2	1.6	1	.8	0	—	4	3.1
Turn on the TV.	1	.8	1	.8	15	11.6	2	1.6	19	14.7
Put a tape in the VCR.	23	17.8	1	.8	42	32.6	2	1.6	67	51.9
Walk from the living room to the front door.	1	.8	4	3.1	7	5.4	3	2.3	15	11.6
Dial [a specific number] on the telephone.	2	1.6	2	1.6	39	30.2	3	2.3	46	35.7
Go to the mailbox, get the mail and put it in the appropriate place.	3	2.3	2	1.6	22	17.1	6	4.7	33	25.6

This project was funded by the Health Care Foundation of New Jersey and the Grotta Foundation for Senior Care.