To ensure that the LIFE Center provides appropriate consumer health and clinical education resources, a formalized Resource Needs Assessment Study was conducted in the Winter/Spring of 2001. Over 200 people participated in this study. Data were collected from consumer telephone interviews (N=50 former patients/family members), consumer discussion groups (N=47 persons with disabilities), discussion groups with rehabilitation professionals (N=123 medical/nursing/allied health professionals), and telephone interviews with representatives from local and national resource centers (N=16 centers). Analysis consisted of using descriptive techniques for quantitative and qualitative data.

The Resource Needs Assessment Study Questions were (a) What are the most pressing resource needs for persons and families with disabilities? (b) What resources have been helpful? (c) What are some of the difficulties in accessing resources? and (d) How do needs for resources change over time? In addition, suggestions for developing the Center were solicited.

Based on the findings that emerged for each of the needs assessment questions and interviews with resource centers throughout the United States, the recommendations were that the LIFE Center:

• Focus on the most pressing needs identified by consumers and professional groups,
• Capitalize [utilize] on existing environmental strengths and resources known to be helpful,
• Approach difficulties as opportunities to acquire additional untapped resources and develop referral mechanisms, and
• Recognize that the needs for resources change over time as people with disabilities (PWDs) and their families progress through the same stages of development as persons without disabilities.

Resource needs go beyond the scope of information regarding physical needs and transcend to resources for readjusting and seeing recovery as a process beyond the rehabilitation stay. As a result, strategies and actions to implement the above recommendations should address the consumers quest for wellness and promote their participation in society by the efficient and appropriate transfer of information and knowledge within a supportive setting.

The preceding highlights signify the priorities for resource procurement and development.

• What are the most pressing needs for resources?

The top most pressing needs identified were:

• Psychological Support: includes emotional, mental, cognitive, domains to promote/enhance coping, self–acceptance, and personal and family adjustment.
• Recreation/Socialization: the needs to meet people, avoid social isolation, and develop new hobbies.
• Caregiver Assistance: finding and securing help with daily care and living such as light housekeeping and ensuring safety with the person/home.
• Transportation: the ability to find and secure affordable transportation that would enable participation in daily life activities and recognize ones ability to continue to drive.
• Care/Treatment Information: for consumers this meant finding resource avenues to enable additional therapies to maximize functioning. For professional groups, this meant providing patient education materials.
• Equipment: knowing where to find equipment and who is responsible for paying for equipment.
• Medical Information: information that helps a person and/or family member better understand what has happened and the outcomes they can expect to achieve.
• Housing: Having a place to live that is accessible and affordable, intended to foster independent living, such as a group home, single–room occupancy, or single–dwelling home.
• Financial: Having the monetary resources to pay for services to function
• independently.

• What have been the most helpful resources for you and/your family or (in assisting your patients)?

While there are many helpful resources available, consumers and professionals identified the following as most helpful:

• Condition–related societies, such as the MS Society, National Brain Injury Association.
• Not–for–profit community organizations, such as Independent Living Centers, organizations associated with the Arts, community centers/clubhouses, city, state, or federal government organizations, such as the Mayors Office for Disabilities.
• Consumer education/health information materials: Information on health and medical topics provided in response to requests from the general public, including patients and their families, such as self–help books or magazines.
• Healthcare providers and hospital organizations: groups of people or organizations representing diverse interests with the principle objective to improve health care effectiveness.
• Peer supports, such as peer groups that offer psychological support, such as patient support groups.
• Professional organizations, such as the American Nurses Association and professionals, such as social workers.
• Technological resources, such as the Internet or computer activated communication devices.
• Patient education: planned activities initiated by a health professional, whose aim is to impart knowledge, attitudes and skills with the specific goal of changing behavior, increasing compliance with therapy and, thereby, improving health, such as tip–sheets.

• What were some of the difficulties in accessing resources?

While there were some difficulties specific to either the consumer or professional groups, those difficulties common for both were:

• Inability to access resources due to lack of knowledge, or not knowing where to find resources, such as not knowing about specific government entitlements.
• Limited or no resources available, such as inability to find a suitable caregiver to hireincrease demand and decrease supply.
• Lack of support or help from others, such as being a single parent who is hospitalized and has no one to provide childcare.
• Lack of financial resources or problems accessing financial resources, such as certain supplies not being covered by insurance.
• Inability to access transportation, such as having to wait for long periods of time to get accessible transportation to come to their home.

• How does the need for resources change over time?

Consumers and professional groups indicated that the needs for resources change over time as a result of age–related changes, such as when a young child enters kindergarten and the focus changes to special education, and/or a move from a physical emphasis to a psychological wellness and support emphasis, such as a 35–year–old female whose initial focus was being able to dress herself now focuses on body image.

Both consumers and staff indicated a strong need for the center to act as an information and/or referral center. Suggestions common to both were to provide support groups for patients and family members. Following this were common suggestions to conduct lecture series on acceptance, anger management, grief, coping skills, medications and management, new developments in treatment, education to family members on specific impairments/illnesses.

Consumers also suggested introducing persons newly diagnosed to persons who are positive role models, perhaps through a mentoring program, to promote self–advocacy. These suggestions coincide and build upon information gained from interviews with representatives from resource centers throughout the country.

Results from the 16 resource centers interviewed throughout the United States captured the three models of Consumer Resource Centers or Libraries. These models are Consumer Health, Consumer Health and Patient Education, and Consumer Health, Patient Education, and Professional Education. These models dictate the process used to select resource materials, acquire human and technological resources necessary to staff the Center, decide upon hours of operation, and create the type of setting or atmosphere that coincides with the centers mission.

Furthermore, a critical finding was that consumer health and patient education are two distinct entities. Although they may overlap, the type of information and staff that are responsible for reviewing and compiling information have distinct skills and roles. In addition, findings confirmed the need to hire professionally trained staff, including a consumer health librarian and resource staff with clinical backgrounds in order to provide accurate and efficient response and referral to a broad array of resource requests.

The study also confirmed the importance of offering community outreach programming from the onset of recovery and throughout the life span. Centers stressed the need to create an inviting atmosphere that nurtures visitors as they explore resources.

The people who made it possible for us to conduct this needs assessment and who provided us with invaluable information are the co–founders of the Center, Mrs. Judith Neisser and the Samuel Family Foundation, the RIC Womens Board, the consumers who took the time to talk with us on the telephone, the consumers who allowed us to attend one of the support groups and who participated in one of several discussion groups, the rehabilitation professionals who took the time out of their busy day to participate in one of many group discussions, and representatives of consumer resource centers who shared pertinent information and offered suggestions for making a resource center successful.