| Child Abuse and Chronically Ill Children | |
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In 1999, the day after Christmas, Dawn and Richard Kelso left their 10-year old child, Steven, at a local hospital. They also left his toys, clothes, medications, and a note saying they could no longer care for him. Steven has cerebral palsy, is confined to a wheelchair, and requires a respirator to breathe. Even though the Kelso's had the financial means to hire nurses, respite care was unavailable over the holidays. If a well connected and affluent family has difficulty finding respite care, what is available for middle and low income families?
Crohn's Disease (CD) and Ulcerative Colitis (UC), collectively known as Inflammatory Bowel Disease (IBD), are not only diseases that affect adults. The onset of IBD is most often seen between the ages of 15 and 35. 10 percent of all IBD patients in America are children under the age of 18. That translates to 100,000 youngsters.
Unfortunately, special needs children, such as those with IBD or other chronic illnesses, are at a greater risk for neglect. The types of neglect can include emotional, educational, physical, and medical.
The illness creates a strain on the entire family. The parent's marriage may suffer, siblings feel "left out" or alone, and time spent in the hospital can interfere with the bonding process. The administering of daily care such as medications and intravenous feedings can be draining for the caregiver.
A chronic illness does not only strain a family emotionally, but also financially. Medical bills and wages lost from taking time off to care for an ill child complicate the issue even further.
For families with chronically ill or physically disabled children, many organizations and charities offer help. Help can come in the form of respite care, affordable or free health insurance, and parenting help and information.
| ARCH National Respite Network and Resource Center |
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Who They Are: "The ARCH National Respite Network and Resource Center is funded in part by the U.S. Department of Health and Human Services, Administration for Children, Youth and Families, Office of Child Abuse and Neglect, under cooperative agreement." What They Do: "The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state." How to Contact Them: Find links to respite care agencies in all 50 states, Washington DC, Canada and Puerto Rico from their web site. ARCH can also be contacted at their main office:
ARCH National Respite Network and Resource Center |
| Children's Defense Fund |
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Who They Are: "CDF began in 1973 and is a private, nonprofit organization supported by foundations, corporation grants and individual donations. " What They Do: "The mission of the Children's Defense Fund is to Leave No Child Behind(r) and to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start, and a Moral Start in life and successful passage to adulthood with the help of caring families and communities." From their web site, the CDF offers information about free and low cost insurance offered to children throughout the United States, Puerto Rico, and Guam. How to Contact Them: For information on health insurance for children, visit the CDF web site To contact CDF about their other programs, contact a local chapter, or the national headquarters at:
The Children's Defense Fund |
| Big Brothers Big Sisters |
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Who They Are: "Big Brothers Big Sisters of America has remained the expert in youth mentoring since its founding in 1904." What They Do: The Big Brothers Big Sisters program offers adult volunteers who spend one-on-one time with children from ages 6-14. The volunteers are screened and trained to serve as a mentor and friend to a child in need. How to Contact Them: Contact information for offices in all 50 states, Guam and Puerto Rico can be obtained from the BBSA website. BBSA can also be contact through their National Office:
Big Brothers Big Sisters of America |
| Other Tips and Services: |
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• Prevent Child Abuse America offers these files in PDF format: Advice for new Moms and Dads, and Twelve Alternatives to Lashing Out at Your Child. • The Maternal and Child Health Bureau offers The Care Notebook. The Care Notebook is a series of printable worksheets to help keep track of appointments and care and organize information regarding a care team and other resources. • Parents Anonymous has support groups for parents to help each other. Call (909) 621-6184, or visit their web site for more information. • The Make A Wish Foundation grants wishes to children with life-threatening conditions. • The National Information Center for Children and Youth with Disabilities has an article addressing the needs and concerns of obtaining quality respite care for fragile children - Respite Care: A Gift of Time. • The Arc of the United States has a Q&A on respite care. • The National Respite Coalition has compiled a list of Statewide Respite and Crisis Care Contacts. |
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