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Media Releases
New Website Assists
Children with Juvenile Arthritis
Site Helps Families Understand Programs and Laws
Columbia, Mo. (July 25, 2006) Arthritis is widely perceived as aches and pains that occur as people age. But for some 285,000 children in the United States who have juvenile arthritis (JA), the illness is neither an old person's disease nor just aches and pains. In growing children, JA has the potential to cause major disability and even death.
Juvenile arthritis is hard to cope with physically. Navigating the maze of state and federal laws and programs that provide benefits for children with juvenile arthritis is even more challenging for families and caregivers of children who need a constellation of services to treat arthritis properly. Research indicates that minority children with arthritis are especially disadvantaged when it comes to receiving proper care.
A new Web site gives families and caregivers information to advocate for their children. The Missouri Arthritis Rehabilitation Research and Training Center (MARRTC) at the University of Missouri-Columbia has launched an online juvenile arthritis resource center called http://www.JAhelp.org. The website guides families and caregivers toward a better understanding of state and federal programs, allowing them to use the programs more effectively. The Web site offers access to and explanations of various programs, laws, and policies designed to help children with arthritis.
"This site is meant to level the playing field for people who are often stymied by the laws, regulations and procedures that must be followed before receiving benefits for their children," says Michael Jonathan Grinfeld, the principal investigator of the Web site project, and associate professor at the Missouri School of Journalism. "What we've tried to do in designing this website is to provide parents or others who care for children with JA with the tools to be able to advocate for their children and assure they get all the care they need."
In addition to providing information, the website also offers an online worksheet to help families collect the information they'll need to apply for benefits. The finished worksheet can then be used as a guide for completing the actual application forms from various programs. Some of the topics featured and explained on the website include:
S-Chip,
Section 504-A
American Disabilities Act (ADA)
Supplemental Security Income (SSI)
Social Security Disability Insurance (SSDI)
Medicaid
Individuals with Disabilities Education Act (IDEA)
Private insurance
Juvenile arthritis can have a profound effect on numerous aspects of everyday life, such as in the child's academic progress, social and family activities, mobility and health care. "Families affected by juvenile arthritis and other rheumatic conditions are searching for any information they can find to assist their children and their family in coping with the disease process," says Beth Richards, manager of the Missouri State Arthritis and Osteoporosis Program "Although limited, resources are available. They need to be informed on how to connect and utilize them effectively."
Partners in this project are the American Juvenile Arthritis Organization, The Beach Center on Families and Disability at the University of Kansas, the Missouri Arthritis and Osteoporosis Program and the Missouri Minority Health Alliance.
The Missouri Arthritis Research Rehabilitation and Training Center (MARRTC) was established in 1971 at the University of Missouri-Columbia Arthritis Center. MARRTC is funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (H133B031120) and is the only federally funded arthritis rehabilitation research and training center in the country.
As part of the MU Health Communication Research Center (HCRC), MARRTC's mission is to become a national leader in the areas of disability management and communication, improve the quality of life and promote independent living among people who have arthritis and arthritic conditions. MARRTC's core message is "Disability is everyone's issue."
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