Disabilities, also known as activity limitations, are restrictions in the person's ability to perform activities of daily living (ADLS), e.g., toileting, bathing, mobility, or instrumental activities of daily living (IADLs), e.g., attending school, working, or socializing as a result of impairments, which are the result of either a congenital, e.g., cerebral palsy, or acquired disease, e.g., multiple sclerosis, arthritis, or traumatic event, e.g., spinal cord injury or traumatic brain injury( ₈ ; ₉ ). The range and depth of services needed by persons with disabilities (PWD) result in higher costs of healthcare than the general population( ₁₀ ; ₁₁ ). Currently, there is not an integrated healthcare system designed to serve the needs of PWDs. Persons with disabilities receive services from an array of public and privately funded programs that provide single services, such as healthcare, social, and income services. As a result, PWDs and their families are forced to navigate through a complex service delivery system. As advances in medicine increase, the life expectancy for persons with chronic diseases and disabilities, the number of disabled increases along with their life-long needs( ₁₂ ).

Progressing from one developmental life-stage to the next and participating in society regardless of having an activity limitation is a fundamental right for all individuals. Research indicates that people with disabilities and their families have a myriad of needs that require resources to promote and support their successful development and participation in society ( ₁₃ ; ₁₄ ; ₁₅ ; ₁₆ ). These needs include on-going medical education, vocational and/or post-secondary education and training, patient and family support, healthcare coverage, and advocacy to name a few.

Furthermore, PWDs and their families experience similar needs as persons without disabilities that coincide with the developmental life-stages. These stages and need include: infancy—separation, autonomy, mobility skills; latency/school-age--peer and school relationships; adolescence and young adulthood—maturing body, sexuality, intimacy, career and post-secondary education, separation from family, peer relationships; adulthood and middle age---marriage, family, career; and older adulthood---family, career and contemplating about retirement, affects of aging process on health status. However, the difference between these two groups is that the intensity for need is heightened, the available resources are often fewer, and the societal barriers are often greater ₁₇ ; ₁₈ . Throughout the lifespan PWDs and their families require social, psychological, financial, and emotional support ( ₁₉ ; ₂₀ ; ₂₁ ; ₂₂ ; ₂₃ ), integration and reintegration into the community, health information ( ₂₄ ; ₂₅ ; ₂₆ ) and caregiving ( ₂₇ ; ₂₈ ; ₂₉ ; ₃₀ ) .

Moreover, research has shown that persons with disabilities and their caregivers are at risk for a variety of emotional, behavioral, and physiological morbidities ( ₃₁ ; ₃₂ ; ₃₃ ; ₃₄ .) As a matter of fact, having a disability, being socially isolated and/or having experienced a traumatic event are all risk factors for adolescent suicide in the United States ( ₃₅ ; ₃₆ ). The Centers for Disease Control and Prevention redefines the function of public health in the field of disability to include preventing co-morbidities as a result of the primary disability ( ₃₇ ; ₃₈ ). Creating programs that can address the resource needs of persons with disabilities and their families is essential to responsible public policy and program implementation. As a result, program planning and monitoring efforts that take an ecological approach (focus on transportation, housing, school, employment, community life, and socialization) may have a greater contribution to secondary prevention and early intervention than programs that focus on one component, e.g., physical limitations.

In 2001 the HRC conducted a Resource Needs Assessment Study by collecting data from 123 key informant interviews with persons with disabilities and their families and professionals. Specifically, collection occurred from the following four sources: (a) standardized consumer telephone interviews, (b) professional group interviews, (c) consumer discussion group interviews, and (d) telephone interviews with directors or representatives from consumer health resource centers throughout the country. Findings from the HRC's Resource Needs Assessment revealed that the top most pressing needs for persons with disabilities were:

• Psychological Support

• Recreation/Socialization

• Caregiver Assistance

• Transportation

• Care/Treatment Information

• Equipment

• Medical Information

• Housing

• Financial

• Employment

• Education.

Similarly, Louis Harris and Associates conducted the National Organization on Disabilities (N.O.D.)/ Harris Survey (1998). One thousand Americans with disabilities age 16 years and over were interviewed over the telephone. Based on all respondents data show the following were problems that they “sometimes face” are: not having enough money, 68%; inadequate health insurance, 40%; inadequate work opportunities, 34%; not having a full social life, 51%; inadequate transportation, 27%; negative public attitudes, 31%, and poor access to public facilities, 25% ₃₉ ( ₄₀ ).

Literature highlights the prevalence of persons living with disabilities and their comprehensive unmet needs that pose limitations in their ability to access resources and participate in society to their fullest capability ( ₄₁ ; ₄₂ ; ₄₃ ). Innovative programs can strengthen and promote access to the necessary resources, highlight opportunities, and create attention to public policy issues affecting vulnerable populations, i.e., lack of accessible and affordable housing. Program evaluation activities assure that effective programming occurs.

Program evaluation often evokes a variety of responses that include fear, excitement, and apprehension. It is rare that grantors do not require some type of program evaluation to monitor the process and intended deliverables and/or outcomes. The definition of the practice of evaluation research is:

The systematic collection of information about the activities, characteristics, and outcomes of programs for use by specific people to reduce uncertainties, improve effectiveness, and make decisions with regard to what those programs are doing and affecting, ( ₄₄ ).

For the past decade, there has been a shift of emphasis on moving away from outcomes to looking at implementation and development and to use the evaluation as opportunity to make programmatic changes during implementation rather than waiting until the conclusion of the program ( ₄₅ ). Specifically, evaluators are actively involved in creating more successful programs by providing input along the way and examining key variables. Variables commonly defined in most types of evaluation research include:

• Target population: The unit at which the program is directed.

• Specificity: The extent that you exclude persons not at risk.

• Stakeholders: Individuals and or groups directly or indirectly affected by the program. For example, grantors, policy makers, target population, consumers, patients, staff, family members, etc.

• Program Coverage: The extent to which the program is reaching its target population.

• Intervention: Any program or effort that was designed to produce changes in a target population.

• Delivery System: The program services, materials, space, human resources, time, procedures, and anything else that influences the program.

Moreover, the key to program evaluation is keeping the big picture in mind. Thinking about what you want to do with the data directs you to develop user-friendly data collection systems and to develop an appropriate evaluation design. Evaluation researchers ( ₄₆ ; ₄₇ ) describe various common types of program evaluation: cost/benefit analyses, cost/effectiveness, impact assessment efficiency, program monitoring, needs assessment, formative, and naturalistic or fourth evaluation. As shown in Table 1, each type of design addresses a specific type of evaluation question. A process/program monitoring evaluation design best uncovers the information necessary to understand program coverage as it relates to resource requests.

Figure 1

Table 1: Descriptions and Examples of Common Type of Program Evaluation Design

Figure 1 illustrates the condensed conceptual model for this Health Resource Center. It is based on the following problem statement: a) the majority (80%) of this hospital's patients are discharged back to their homes and communities; b) a hospital-wide satisfaction survey indicated a decline in patient and family satisfaction in preparation for discharge/in-patient education; and c) the current health care environment of shorter lengths of stay, a nursing shortage, and the absence of a centralized and up-to-date health resource center.

Figure 3

Figure 1: Conceptual Model

The intervention developed and implemented is the Health Resource Center (HRC). In Figure 2, the simplified intervention model illustrates that the HRC is a primary space within the RF based on an ecological framework that encompasses standardized, up-to-date patient education, consumer health and professional resources related to disabilities. Process outcomes include the target population and delivery system. The target population requesting resources represents persons with disabilities, their families, & rehabilitation staff. The delivery system includes the human resources necessary to deliver services (respond to requests, host programs, events, etc.). There are 3.0 FTEs; technological resources are the five on-site computers, the website and database; and space to host events, supports groups, and programs. Finally, the intermediate and long-term outcomes are likely consequences of the HRC.

Figure 4

Figure 2: Intervention Model

^aDue to the sensitive nature of requests and to protect callers' confidentiality, volunteers do not respond to request or have access to the request log.

The ADN took the first six months of the program's cases entered in the request log (August 4, 2003 to February 3, 2004) for an N=287 cases. Each case represents a request and NOT a new person. For example, one person could call several times with different requests and each request counts as a separate case. Any identifying information was deleted prior to the ADN cleaning and analyzing data.

Any identifying information for each request was deleted prior to being entered into SPSS and analyzed. Data included for analyses were: visitor type, contact method, referral source, Life Topic, time spent, and action taken. All data variables were nominal with the exception of time in minutes, an interval measure. The qualitative variable “action taken” was transformed into a quantitative variable by coding the data using the categories from the original Resource Needs Assessment (refer to Table 3.). For example, one entry read, “...Printed out the new Access Living list.” This would be coded as “community organization.”

Figure 5

Table 3: Definition of Action Taken

Data were analyzed by descriptive technique and non-parametric test statistics secondary to a lack of a normal distribution and not having a randomized sample. Time spent, an interval variable, was converted to minutes; and also made into a new ordinal variable called Time1. Findings are presented by evaluation question.

Who is accessing the HRC?

Demographic data show that the highest user group is the general public for 39.8% followed by the out-patient group at 34.9%. Thus, outpatients and general public comprise 75% of persons requesting resources during the first six months (refer to Table 4.). This finding may be due to the HRC being located at the first floor entry for which the outpatients and the public enter. People who are waiting for transportation or appointments are more likely to roam into the HRC rather than inpatients and staff who are on the units and busy with therapy schedules.

Figure 6

Table 4:Visitor Type

As shown in Table 5, the predominant method of contact was made in-person (56.8%), while 95% of persons made resource requests either in–person or by phone. Given technology, the use of the Internet, and access to HRC website, it is notable that more persons do not use the computer to contact the HRC.

Figure 7

Table 5: Contact Method

Self referrals or referrals from a family member or friend account for 61% of contacts. Combine this figure with referrals by RF staff for a total of 88.3% (refer to Table 6.).

Figure 8

Table 6: Referral Source

Table 7 illustrates that the majority of visitors contact the RF by phone or in-person; therefore, it is not surprising that inpatients and outpatients made requests via in-person and that public made requests via phone. This finding emphasizes an opportunity to appeal to the patients by building in a formal mechanism, i.e., a prescription to the HRC from their healthcare provider, to access to this target population. Meanwhile, the RF staff mostly contact the HRC via phone or in-person (81.5%). By having human contact with the RF staff, HRC staff can build relationships and demonstrate the utility of having the Center.

Figure 9

Table 7: Contact Method by Visitor Type

Data in Table 8. again show that most contacts are made through self referral, etc. In examining referral by visitor type, the most common source of referral for both patient groups and public still remains self, family, or friend. Again, this data emphasizes an opportunity to market to healthcare providers and build in a formal mechanism for referrals.

Figure 10

Table 8: Referral Source by Visitor Type

What are their resource needs?

Definitions for topics are listed in Table 2. Table 9. shows that the top five resource needs are: medical information, equipment, housing, multiple topics, and support (refer to Table 9).

Figure 11

Table 9: HRC Topics

When exploring topics by visitor type, descriptive data show that medical information is the top need for all types of visitors. Moreover, two-thirds of RF staff is for medical information. These findings demonstrate the opportunity for patient education, consumer health, and professional education as it relates to physical health. However, the top needs change as you look across visitor types. For example, out-patient and public need resource assistance with equipment, while the requests are more varied across types with many empty cells. Findings are supported by the Resource Needs Assessment Study (2001), which reveals that resource needs change as persons with disabilities move through the process of recovery.

Figure 12

Table 10: Topics by Visitor Type

What are the actions taken to address these needs?

Remarkably, the top action taken to assist in meeting the resource requests is referral to the RF system of care. Two-thirds of all requests were addressed within the RF System, technology, government, consumer education, or a community agency. The ADN used a selective random sampling technique of 28 cases to determine if the website provided access to action taken/resources. Findings show that 68.0% (N=19) were retrieved from the website. This finding recognizes the benefit of using the website as an efficient method to meet the needs of resource requests. Thus, this finding presents an opportunity to continue to build on website collection for efficient response to requests. Furthermore, program-planning efforts, i.e., the Resource Needs Assessment Study, directed staff to identify appropriate resources.

Figure 13

Table 11: Action Taken

What are the time elements necessary to address these needs?

Table 12 shows descriptive data on the time spent to respond to a resource request. Data show that on average it takes 18.10 minutes for a request with a mode of 10 and median of 15. Due to outliers, the range is from 5 minutes to 120 minutes. Over 94.3% of the requests were handled in 30 minutes or less (refer to Table 13.). The majority of outliers occurred with medical information (N=6) and multiple topics requests (N=3) and with one request in each of the following: housing, education, employment, inspiration and hope, and caregiving. Having a knowledgeable staff who are familiar with conducting Internet searches and using the HRC website are probable factors that contribute to the seemingly efficient time it takes to respond to the resource requests.

Figure 14

Table 12: Descriptive Statistics: Time Spent to Respond to Requests (N=282)

In further non-parametric analyses, a Spearman's rho test statistic was computed to see if there was a correlation between time spent and life topics. There was a not significant correlation at the p< .05 level. Kruskal-Wallis test statistic showed a significant difference at the p<.05 level among visitor type (independent nominal variable) and time spent (dependent interval variable) with in-patient having a higher rank (higher ranking indicates more time spent).

Figure 15

Table 13: Time Spent Responding to Requests

Limitations with monitoring the resource requests for the first six months of the program's existence include: a) a new data collection method with initial variations in logging information; b) a non-experimental evaluation design; and c) a lack of estimated number for target population which may lead to over coverage.