UNITED SPINAL ASSOCIATION ILLINOIS CHAPTER

United Spinal Association Illinois Chapter OVERVIEW

RESPONSIBILITIES Except for one full-time employee and one part-time employee, all work of the association is done on a volunteer basis by the Board of Directors, a Medical & Scientific Advisory Board and other persons interested in the cause of USAIC.

BOARD OF DIRECTORS

In 1979, the original Board was formed by a group of people who had volunteered for what was then the National Paraplegia Foundation (NPF), headquartered in Chicago, Illinois. NPF moved to Massachusetts but the founders, still wanting to be part of the organization, started the Illinois organization and assumed leadership roles until procedures were set in place to incorporate new people.

Candidates for Board positions are selected annually by a nominating committee of at least three people. The Nominating Committee is appointed by the Board.

Candidates are chosen from among people who are actively involved in the organization’s work and are deemed to be capable of furthering the USAIC cause. Generally we have representatives from rehabilitation hospitals that have spinal cord injury units to help maintain a strong knowledge base about current trends in care and research. We also have a position reserved for the Vaughn Chapter of the Paralyzed Veterans of America (PVA) and this person is appointed by PVA. Any USAIC member who is interested in serving on the Board is welcome to be considered as a candidate for election by the membership but they will be encouraged to attend Board meetings and serve on a committee for a year prior to seeking a Board position.

CONDUCTING ACTIVITIES

The Board sets policy and determines the direction of the organization but daily activities are managed by the Executive Director. The Executive Director works a minimum of 40 hours per week. Salaries are determined by the Board by making comparison with salaries paid by other not-for-profit organizations of similar size and nature.

FEES FOR SERVICES

There are no fees for services, nor any other qualifications required for service.

Speakers who present Injury Prevention Programs, do “In Services” for hospitals and universities, or represent the association at various events, are not paid but they are reimbursed for expenses.

BASE OF OPERATION

In January 2014 a virtual workplace was created because all contacts are made via telephone and the Internet.

ORGANIZATIONAL ACTIVITIES :

The PRIMARY MISSION OF USAIC is to provide people with the information and the peer support they need to pursue a rewarding life after paralysis occurs. Many people call the association for information only once and the contact may be an extremely short period of time. Others may be frequent callers, using the information services throughout their lives. Whatever the request, the association tries to be of help.

INFORMATION AND REFERRAL takes place on a daily basis as people make contact looking for things such as facilities that specialize in spinal cord injury care, making home modifications, purchasing medical equipment and supplies, disability benefits, and just about anything else that a person needs to sustain life with a severe disability. The onset of paralysis is so overwhelming that many people don’t even know what to ask for, but they do find a place where they can comfortably find direction.

PEER SUPPORT GROUP meetings are held on a monthly basis so that people have a place where they can meet and talk with others who are living in the community. At present, groups meet at Advocate Christ Hospital in Oak Lawn, Marianjoy Rehabilitation Hospital in Wheaton and Hope Clinic in Springfield.

ONE-ON-ONE PEER SUPPORT is available for those individuals who are not able to participate in the peer groups or may have issues to discuss on a more personal basis. USAIC members who participate in the peer support program attend an orientation session and are given program guidelines to follow whenever they are representing USAIC. Orientation sessions are held in rehabilitation hospitals with at least one of their staff members participating. While hospital staff do not attend peer visits because that would interfere with the personal nature of the program, they generally follow-up to make certain that the meetings went well.

EDUCATIONAL PROGRAMS are presented for the benefit of those individuals who are spinal cord injured and their families, as well as health-science professionals. Professionals working in spinal cord injury or disability related fields are called upon to share their expertise on a volunteer basis so that programs can be presented free of charge. With some of these programs, continuing education is offered to health science professionals. A Patient’s Perspective is frequently presented to students of Physical Therapy, Occupational Therapy and as “in services” for hospital staffs.

BEYOND BOUNDARIES is a unique three-day, outdoor adventure including activities such as camping, kayaking and rock-climbing. Teams from rehabilitation hospitals participate. Each team has about six members including people who are paralyzed. For participants who are spinal cord injured, this experience can be life-changing as it offers not only the vision of what can still be done following the onset of paralysis, it actually allows them the opportunity to do it. This experience has also been extremely beneficial to hospital staff as they can expand their thinking about post-rehabilitation activities for their patients.

THINK FIRST is a national brain and spinal cord INJURY PREVENTION PROGRAM. Junior and senior high school students are the targeted audience because they are approaching the age when they are most at risk for injury but other groups may also request programs. Most brain and spinal cord injuries are the result of the same causes and most can be prevented. Members who are spinal cord injured go into schools to talk with young people about their own injury and to encourage safety conscious attitudes. Programs are so well received by students and faculty that many teachers have made THINK FIRST part of their curriculum and invite USAIC back for every rotation of students. During recent years we have been averaging 40 classroom presentations to approximately 2.5000 students. We also participate in health fairs and other community events, usually by staffing an exhibit related to injury prevention. In late 2014 a new component to the program is beginning to target senior citizens with information on prevention of falls because as people age, falls become the leading cause of SCI.

RESEARCH PROJECTS, STUDIES AND SURVEYS are conducted by professionals and by students working in masters and doctorate programs. In the interest of bringing about better care and hopefully the ultimate cure, as we are called upon to do so, the association helps to recruit project participants.

USAIC also presents a program entitled, “A PATIENT’S PERSPECTIVE” to hospital personnel and health professional students so that they have an opportunity to learn what it’s like to become paralyzed and things that they can do to facilitate adjustment to injury. It is an opportunity to sensitize caregivers about the impact on individuals and family members when one sustains a severe disability

In order to educate and motivate our membership, a LEGISLATION AND ADVOCACY committee periodically disseminates information about pending legislative issues that may impact the lives of people with disabilities.

LETTERS OF SUPPORT are sometimes requested when hospitals or other organizations are applying for grants that will enhance life for people with disabilities and if the proposed project is deemed to be of value, such support is given.

SCI Illinois, the association’s electronic newsletter is issued monthly.

SPECIAL EVENTS AND FUND RAISING Financial support for SCIA comes from special events such as an annual winter dinner, a golf outing, and through recruitment of runners who participate in the Bank of America Chicago Marathon. Each activity has a committee of people who help with the planning and execution of the events.

USAIC is a member of the Community Health Charities of Illinois, an employee payroll contribution program in both governments and private sector businesses.

USAIC is a MEMBERSHIP based organization and annual dues are another form of financial support. Membership is NOT a requirement for services and membership is now free for those personally impacted by SCI.

Contributions may also be generated via letters of appeal, memorial contributions and unexpected gifts. Donations of equipment are accepted and things are always given to someone in need.