Identifying the unmet independent living needs of persons with spinal cord injury.

The comprehensive needs of persons with spinal cord injury (SCI) include not only health care needs, but many environmental and societal needs following discharge from a rehabilitation program. Regardless of the quality of inpatient care many of these needs cannot be met through inpatient rehabilitation (Pollack, Zugar, & Walsh, 1992). There are a couple of reasons for this. One reason is that independent living (IL) services provided inpatient to assist people with the difficulties of living in the community with a disability do not necessarily generalize to the 'real-world'. Independent living needs in the 'real-world' are more complicated than can be experienced in a protected hospital environment. For example, while hospitalized, patients can be given general information about what attendant care services are and how attendants should be supervised, because of the hospital context, this information can only be provided in an abstract manner. Specifics, such as managing attendants and resolving disputes with them cannot be done prior to community re-entry. A second reason why all independent living needs cannot be met during inpatient rehabilitation is that medical professionals and insurance providers tend to focus narrowly on maximizing the quality of medical outcomes, with insufficient appreciation for the context in which those with SCI will have to function subsequent to their discharges.

In response to this problem, an IL movement has arisen (Nosek & Fuhrer, 1992). The IL movement focuses on empowering persons with disabilities to maximize their autonomy. Independent living services frequently include information and referral concerning personal attendants and housing; skills training dealing with transportation and finances; peer counseling; advocacy aimed at obtaining necessary support services within the community; and information concerning equipment repair and recreational activities (Fuhrer, Rossi, Gerken, Nosek, & Richards, 1990). Historically these services have been provided by Centers of Independent Living (CILs).

With the growth of CIL programs, many have assumed that the IL needs of persons with SCI are now being adequately met. Recently this assumption has come into question. A study by Gerhart, Johnson, and Whiteneck (1992) found that frequently the needs of persons continue to be unmet. They found that unmet needs were disproportionately prevalent among those with minimal impairment. Gerhart et al. (1992) identified the traditional rehabilitation system, which focuses almost exclusively on minimizing the effects of disability and impairment without regard to patients' social and environmental contexts, as a major impediment to persons with less severe impairments. Other factors identified as adversely affecting the rehabilitation services provided to this subgroup included limited interaction with rehabilitation providers and short lengths of stay.

Gerhart et al. (1992) underscore the importance of independent living services for persons with SCI:

Not only are persons with minimal deficits likely to receive relatively little in the way of therapeutic intervention, their financial and vocational needs are not addressed. These are necessary to ensure such positive outcomes as successful adjustment, restoration of self esteem, and resumption of previous family, social, and vocational roles. Clearly this group of individuals is in need of support. (p. 285)

A study by Pollack, Zugar & Walsh (1992) had similar findings. They found that fundamental needs of persons with SCI, particularly those relating to community reintegration, were unmet. Their survey of persons with SCI and hospital staff reports indicated that the circumstances encountered after discharge are much more complicated than those found in hospitals' protected environments.

Means and Bolton (1994) approached the issue of unmet needs differently. They surveyed directors of CILs about what their staffs' felt were the unmet needs of their clients. They found that transportation, personal assistance, housing, and advocacy were among the myriad of needs identified by CIL directors. Although the Means and Bolton study (1994) sampled centers servicing persons with various disabilities, it highlights the inadequate level of resources that confront CILs. There are simply too many unmet needs of persons with disabilities and an insufficient amount of funds: CILs are poorly supported in comparison to most government funded organizations. Staff training, research, and technical assistance opportunities are rare (Means & Bolton, 1994).

The purpose of this study was to explore the unmet needs for independent living services that persons experience. The relationship between prevalence of unmet needs and extent of neurological impairment was subsequently examined. Reasons for systematically elevated levels of unmet needs among those with certain impairment characteristics are discussed, and suggestions are provided for how the rehabilitation process can be modified to remedy these shortcomings.

Method

Subjects

Subjects were persons who completed rehabilitation at the Model SCI Care System at either the University of Michigan or at Craig Hospital in Denver. In addition to having completed their initial inpatient rehabilitation at one of these two medical centers, all subjects were between the ages of 17 and 65 at the times of their injuries, lacked any evidence of substantive cognitive deficits or psychiatric disorder, and had no previous substantive motor impairments. One-hundred and twenty-seven subjects met these criteria and were interviewed for this study. Surveys were completed at least 12 months after subjects' initial discharges from the Model SCI Care System and less than 7 years post injury. Subjects' were classified on the basis of their discharge neurological status. A four part classification system developed by Maynard, Karunas, and Tate (1990) was used. Bracketed groups included: ASIA Impairment Scale Grade D (retained motor function); Paraplegia ASIA Impairment Scale Grades A, B, or C; Tetraplegia ASIA Impairment Scale Grade A, B, or C; and High Tetraplegia above C5. While attempts were made to contact all eligible subjects, some potential study subjects were not interviewed, either because they could not be located or because they refused to participate, generally because the length of the study's interview.

Data Collection

Interviews were conducted by trained interviewers in order to obtain information about IL services received and needed. Demographic and injury related data were retrieved from the two Model SCI Systems databases. The instrument used to assess IL services was the Independent Living Services Evaluation (ILSE) developed at UM. The ILSE has five sub-categories: personal attendant related services; assessment services; counseling and education; community and environmental support services: and structured peer activities. With the exception of three services, counseling and education, peer recreation, and peer support groups, no distinction is made between services received during in-patient rehabilitation and outpatient basis. The reason why questions relating to these three services focus exclusively on their receipt on an outpatient basis is that during inpatient rehabilitation they either have a different focus from that which they have subsequently received or are not available. Inpatient counseling services are widely received but focus on acceptance of one's injury, as opposed to outpatient counseling which tends to emphasize adjustment issues. As an inpatient on a rehabilitation unit, one is surrounded by others who share similar experiences. This provides an informal form of peer support. After leaving the hospital setting, those with SCI frequently have limited contact with other disabled persons. Need for peer support after discharge differs qualitatively, as a result. Peer recreation activities are rarely if ever available to those in inpatient rehabilitation. Moreover, to the degree to which they are available to inpatients, they also differ qualitatively from community peer recreation activities.

An example of the sequence of inquiries used to determine the presence of unmet needs was as follows: "Since your discharge have you participated in any recreational activities that were organized for and by people with disabilities?" If a subject answered 'yes' the next question asked was "Who helped you get this activity started?" If the subject answered 'no', the next question asked was "Would participation in this type of activity be worthwhile for you?" If the subject answered 'yes' this was an unmet need. If the subject answered 'no', this was an IL service that was not needed. As a result, three responses are possible: not receiving and not needing the service (no need), not receiving the service and needing it (unmet need), and receiving the service (received).

Results

Demographic and injury related characteristics are summarized in Table 1. The mean age was 31.5, mean education was 12.2 years, and the mean time since injury was 3.5 years. Males comprised 80% of the sample. In terms of their neurological impairments, 18% of the subjects were classified as ASIA impairment Grade D classification, 34% had paraplegia, 29% had low tetraplegia, and 19% had high tetraplegia.

Table 1

Demographic and Injury-Related Characteristics of the Sample
N = (122)

Variables                                Means or Percentage

Age                                           x = 31.5

Time Since Injury                             x = 3.5

Gender (%)

Male                                          80%
Female                                        20%

Injury Level

ASIA Impairment Grade D                       18%
Paraplegia                                    34%
Low Tetraplegia                               29%
High Tetraplegia                              19%

Marital Status

Not Married                                   57%
Married/Sig. Other                            43%

Education                                     x = 12.2

8-11th Grade                                  25%
High School                                   58%
[greater than] High School                    17%

Occupation

Employed                                      72%
Homemaker                                      2%
Retired                                        2%
Student                                       15%
Unemployed                                     9%

The size of the sample varied from 114 to 122 because for some services subjects' had missing values. The percentage of subjects' responses concerning needs met and unmet during and following discharge from rehabilitation are summarized in Table 2. Column A depicts the percentage of people receiving each evaluated IL service. The services most frequently received were: information concerning [TABULAR DATA FOR TABLE 2 OMITTED] transportation options (77.5%), home assessments (73.8%), and help recruiting and hiring a personal assistant (77.7%). Column B reflects the percentage of subjects reported not receiving the various IL service. Column C depicts the subset of those subjects who report that they had no need for these services and column D summarizes information regarding unmet needs. The percentage of unmet needs ranges from 5% to 38.3%. Peer recreation and peer support groups were the two services for which unmet needs were most prevalent, 37.1% and 38.3%, respectively. While from a clinical standpoint the presence of any unmet need should be remediated, from a policy perspective it is important to focus on areas where there is a systematic elevation. For this reason, this paper emphasizes areas in which such systematic elevation is present.

Cross tabulations counted the frequencies of unmet needs by severity of injury. Based on these tables, Chi-square tests were conducted. While no statistically significant difference were found across neurological groups, clear trends were frequently presented, as is shown in figures 1-3. Considering the distribution of cell sizes found in the cross-tabulations, absence of statistically significant differences are likely to be the result of the sample size. Put otherwise, with more than one-fifth of the cells frequently containing fewer than five cases, the power is insufficient to detect true differences even if they exist (Type II error is high). The present of clear trends can be clearly seen by inspection of Figure 3, in which 50% of those with high tetraplegia and 52% of those with minimal deficits experienced unmet needs, in contrast to 32% and 31% among those with low tetraplegia and paraplegia, respectively. Trends similar to those shown in the figures are also present in other areas about which subjects were queried.

In the case of peer support, the ends of the impairment spectrum both have a much greater proportion of than do the middle two impairment levels. Peer recreation and education and counseling were not as poignant as peer support. Nevertheless, disproportion's exist at the two ends of the spectrum relative to the two middle impairment levels.

Those subjects who received services within one of the ILSE's five areas were asked the value of these services. Table 3 depicts their responses. The two most striking findings in this table are subjects' clear overall satisfaction with the value IL services which they received, and the consistency of their rankings across the five areas of the ILSE. This is true in spite of the wide disparity in the prevalence of service receipt. In all five areas few than 25% of those who received services felt that they were of less than moderate value. Similarly, across the ILSE's five areas, between 63% and 76% of subjects who received services deemed them to be of more than moderate value.

[TABULAR DATA FOR TABLE 3 OMITTED]

Discussion

The results indicate that many persons with SCI need more services after discharge than they receive. Most striking, perhaps is the extent of unmet needs for peer recreation activities and peer support. Although these unmet needs were common among all subjects interviewed, this was particularly true among subjects at the two ends of the impairment spectrum, those with high tetraplegia and those with minimal deficits. The high prevalence of unmet needs for structured peer activities and peer recreation provides evidence that persons with SCI are often isolated from others who share their experiences of being disabled in a society in which they are a minority. Both peer recreation activities and peer support provide support that one is not "abnormal". Modified able-bodied recreation activities allows persons to be active and to socialize with others who are also impaired. Peer support groups allow persons to work out the issues of adjustment that they face and create a support network of others who can directly relate to their experiences of trying to live effectively with a disability.

The high prevalence of unmet needs among persons with minimal impairments for these two services, peer recreation and peer support, concurs with the findings of Gerhart et al. (1992). The sense of isolation discussed above may explain why persons with minimal impairment tend to experience significantly more psychological distress after discharge when compared to those with more severe impairments as was found by Tate, Maynard, and Forchheimer (1992).

One possible explanation for the frequency of unmet needs among these those with minimal deficits is that their high functional level often leads to an inaccurate belief that they will experience full recovery. They are therefore more likely to be unresponsive to assistance as inpatients. Acceptance that they are not going to experience full recovery often does not occur until after their having been discharge from rehabilitation, at which time it is more difficult to learn about and obtain needed independent living services.

A more provoking reason for unmet needs being most prevalent among persons at the two ends of the impairment spectrum, minimal impairment and severe impairment, relates to the orientation of the standard rehabilitation system, which focuses narrowly on maximizing functionality. Functionality is often assessed using measures of the ability to complete self-care activities, such as the Functional Independence Measure (FIM). Because resources are limited, professionals tend to triage focusing services on those persons who have the greatest prospects for improving their ability to conduct self-care activities such as, feeding, bowel and bladder management, and bathing.

Persons with minimal deficits have little or no improvement to make in their ability to conduct self-care activities. Consequently persons with minimal deficits receive less attention from rehabilitation professionals, not because they lack substantive functional limitations, but because the current measures used by rehabilitation professionals are insensitive to their changes. People with minimal deficits tend to have unique rehabilitation needs. Instead of basic self-care skills, these people need to learn acquire proficiency in areas of transportation, vocation, social support, and recreation because their life situations have changed as a results of their injuries (Gerhart et al., 1992). Unfortunately, because in-patient rehabilitation programs focus on minimizing functional independence as defined by such instruments as the FIM, those services which are most pertinent to persons with minimal deficit are frequently not provided.

For similar reasons, those persons with the greatest neurological deficits also do not have their needs addressed by traditional rehabilitation programs. While persons with minimal deficits have little improvement to make in terms of functional independence, those with high tetraplegia are often unable to make substantial improvements in their abilities to directly conduct their self-care activities, regardless of the amount of rehabilitation that they receive. However, just as the ability to complete self-care is the wrong focus for those with minimal deficits, it is also inappropriate to evaluate the success of rehabilitation among those with severe neurological deficits solely on the improvement that they make in independently completing their self-care activities. Instead, they are capable of learning to direct those who provide their self-care. To the extent to which they can do this effectively, they will experience fewer medical complications such as pressure soars and urinary tract infections (Batavia, DeJong, G., & McKnew L. B., 1991; Wilkerson, Batavia, & DeJong, G. 1992). Moreover, this group has just as great or a greater need for peer support than others. Also, while persons with high tetraplegia can not engage in all recreational activities, there are modified recreational activities in which they can participate and from which they can benefit.

Policy Recommendations

Traditional hospital-based rehabilitation focuses on remediation of disabilities, helping those who experience traumatic injuries to maximize their functional independence. In contrast, CILs have a more global perspective. This includes addressing psychosocial needs of those with SCI. Centers for independent living play an important role in developing methods for meeting the peer support and peer recreation needs of persons with SCI. Both the strengths of hospital-based rehabilitation and CIL services are important. In order for persons with SCI to have their needs fully met, these two approaches need to be integrated. Unlike within the traditional hospital-based paradigm, those at the two physical impairment extremes are not neglected in the independent living paradigm.

Unfortunately, because of their restricted financial funding CIL's are unable to expand their services substantially (Means & Bolton, 1994). One alternative would be for CILs to obtain greater financial support through operating collaborative ventures with hospital-based rehabilitation programs. Since CILs have a different orientation and expertise than that which is found in hospital-based rehabilitation programs they are well-suited to supplement traditional medical services provided for persons with SCI. Not only would this allow for CILs to serve a greater client base, it would also help to integrate the two orientations of rehabilitation.

One of the difficulties in making the CILs effective partners is that the need for services is frequently not recognized by those with new SCI until after discharge. This often results in a disruption in the continuity of care in the rehabilitation process. In order to ensure that there is a continuity of care, CIL staff members should be included in patients' treatment teams, especially during the discharge planning phase. One service that CIL's can provide both during and following inpatient rehabilitation is peer support. A majority of the staff at CILs have disabilities. Unlike nondisabled rehabilitation professionals, they can serve as role models for persons who have experienced traumatic injuries, which necessitate substantial emotional and physical adjustments. Thus, CIL staff are well-positioned to effectively encourage those with new injuries to continue to pursue obtaining needed assistance after discharge (Fuhrer, 1990).

The University of Michigan Medical Center and the Ann Arbor Center of Independent Living (AACIL) provide an example of a cooperative relationship. Since 1986, the University of Michigan Model SCI Care System has operated a collaborative program for inpatients with new SCI. These services emphasize training patients in self-management and independent decision-making, preparation for community reintegration, and teaching assertiveness skills. Fuhrer et al. (1990) surveyed medical rehabilitation programs that had cooperative relationships with CTLs and found that CILs that had relationships with medical rehabilitation programs served significantly more consumers than centers not having these relationships. Cooperative relationships between medical rehabilitation programs and CILs should continue to develop in an attempt to integrate services.

As health care costs continue to increase and hospitals are encouraged by limited insurance to discharge patients sooner into the community, it becomes increasingly important to blend the orientations of traditional hospital-based programs with those which emanate from the independent living movement. This will allow for the needs of all persons with SCI to be met, regardless of level of impairment, empowering them to be effective advocates for themselves, thereby ensuring that their broad-based needs for rehabilitation are met.

Research Recommendations

Health care costs are largely shouldered by insurance carriers. Insurance careers need to be able to demonstrate that the rehabilitation services provided are effective in a quantifiable manner. Functional status instruments such as the FIM do provide such quantifiable measures. As a result, treatment plans frequently revolve around trying to maximize FIM scores. While the FIM is an established and reliable measure of functional status, as discussed above, it is based on a very limited construct of disability. Many higher order aspects of productive functioning are unrelated to the self-care tasks measured by the FIM.

There is a need for researchers to develop valid, quantifiable instruments that are more sensitive to broad issues of functioning. To be of interest to insurance companies, government policy makers, and consumers, these instruments must measure outcomes which have cost implications, such as increased independence, return to work, reduced medical costs, and less rehospitalizations. Finally, researchers and health care policy makers must demonstrate that by providing a broader array of IL services, such as those which CILs can provide, long-term costs will be reduced and the productivity of persons with SCI will be enhanced.

References

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Mary J. McAweeney, University of Michigan Medical Center, 1H241 UH, 1500 E. Medical Drive, Ann Arbor, Michigan 48109-0050