Aunt Joyce’s Kids (AJK) is a non-profit 501 (c) (3) organization founded in 2014 to provide financial assistance, domestic services, and educational resources to single-parent caregivers of children, infant to 18 years of age, with chronic and catastrophic illnesses. Children, unfortunately, are suffering across the United States with life-altering and life threatening diseases. Their parents and families rely solely on doctors and medical professionals to provide the most advanced and reliable medicine while they attempt to maintain a semblance of comfort and quality of life for their child during uncertain times. All critical conditions and illnesses that children face are important but to establish eligibility for services, AJK will prioritize the leading causes of chronic conditions/illnesses to Leukemia, Brain and Central Nervous System Illnesses, and Autism. AJK’s main office location is in Jackson, Mississippi but the agency will serve children and families throughout Mississippi and Louisiana.
Facts About Chronic Illnesses in Children
- Autism Spectrum Disorder also known as Pervasive Developmental Disorder (PDD), causes severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old had autism. In the state of Mississippi, there is 1 out every 417 children that is diagnosed with autism. In 2013, 693 were diagnosed. Today, 1 in every 110 children (1 in every 70 male child) worldwide is diagnosed with autism, which makes the disability more prevalent than diabetes, pediatric cancer, and AIDS combined. Studies explain that 67 children are diagnosed with Autism each day. Sources: NIMH, www.nimh.nih.gov, accessed February 11, 2009) and http://www.theautspot.com/library/article/12/autism_statistics/
- Leukemia is cancer that originates in blood-forming tissue. The disease is characterized by the uncontrolled growth of blood cells, usually white blood cells (leukocytes), in the bone marrow. White blood cells are a fundamental component of the body’s immune response. The leukemia cells crowd out and replace normal blood and marrow cells. Leukemia has the highest incidence rate (8.8) found among children aged 1 to 4 years and the highest death rate (0.8) found among children aged 1 to 4 years. In 2014, an estimated 15,780 children and adolescents ages 0 to 19 were diagnosed with cancer and 1,960 died of the disease. Source: (National Cancer Institute)
- Cancer is the leading cause of death by disease past infancy among U.S. children. An estimated 10,380 new cases of cancer are expected to be diagnosed in children ages 0 to 14 years in 2015. The major types of cancers in children ages 0 to14 years are acute lymphocytic leukemia (ALL), brain and other central nervous system (CNS) tumors, and neuroblastoma, which are expected to account for more than half of new cases in 2015. White and Hispanic children have higher incidence rates of childhood cancer than children from other racial/ethnic groups.
- Brain and Central Nervous System Tumors remain the leading cause of cancer-related death in children. Although the overall incidence rate of cancer in children has increased 0.6% annually over the past 35 years, mortality rates for some types of childhood cancer have declined by more than 50 percent.1 The 5-year survival rate for all childhood cancers combined has increased from 60 percent in the mid-1970s to 86 percent in recent years. The improvement in survival is largely attributable to better treatments and to the high proportion of pediatric patients participating in clinical trials. Although outcomes have improved for many childhood cancers, progress in others has been limited. The causes of most childhood cancers are unknown, and for the most part, these cancers cannot be prevented.
Source: Surveillance, Epidemiology, and End Results (SEER) Program and the National Center for Health Statistics. Additional statistics and charts are available at the SEER Web site. Source: U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2012 Incidence and Mortality Web-based Report. Atlanta (GA): Department of Health and Human Services, Centers for Disease Control and Prevention, and National Cancer Institute; 2015.
About the Board of Directors
AJK’s Board of Directors is comprised of local professionals from Jackson, MS, who have expertise and careers that are resourceful as the Director continues to establish and expand the agency’s scope and infrastructure. The following committees will be formed to create policies, procedures, operations manual, funding sources and community initiatives. Members of the board will chair the committees and provide updates to the Board of the Directors. Committee chairs will solicit support and participation from local stakeholders, government officials, hospital staff, family members and community organizations to participate in the policy development and key decision points of AJK as necessary.
Service Delivery and Outcomes
To establish eligibility for services, AJK will use the federal family poverty level scale as a guide to define eligibility criteria as well as an individual/family application and interview. AJK desires to assist the single-parent caregiver but anticipates there will be exceptions or special circumstances that the board of directors will review and decide approvals on a case by case basis, i.e., two-parent home and the expenses exceed income. These exceptions for services will be monitored by the executive director and finance committee.
|Financial Planning||Offer assistance through training and resources on financial and time management for the caregiver|
|Debt Forgiveness/Assistance||Provide assistance for rent payments, utilities, medical expenses and utilities||Free Service|
Therapeutic and Domestic Services
|Counseling||Student interns and volunteers from local universities schools of social work and counseling will conduct intake assessments and provide counseling services to determine the child and family needs as well as determine the level of services required.|
|Domestic Needs||Contractual agreement will be developed with a local cleaning service to assist caregivers with housekeeping. Likewise, a meal preparation agency will be hired to provide prepared meals as needed.||Free Service|
|Case Management Services||A case manager will be assigned to the eligible family after the intake assessment to create an individualized service plan to include action items and timelines.|
|Companionship||AJK staff will arrange for caregivers and children to receive weekly visits and check ins.||Free Service|
|Parent Support Group/Mentoring||AJK will facilitate a family support group to promote a support network and to allow children/families to share their experiences.|
|After school care and tutoring||Provide care for siblings who need homework assistance and supervision while the parent is caring for the ill child.|
|Education supports||Organize volunteer interns from nearby universities to provide tutoring and study assistance for children with special education needs, dyslexia, and autism.|
|Resource Toolkit||Online resource library of state and local resources||Free|
AJK continues to research multiple funding streams and business assistance opportunities to aid in the agency launch. The first effort will be to federal and state grants and private endowments for the start-up costs. Additional strategies will be to identify investors and partnerships in order to fully fund the operation. Once the business is operational and revenue is generated, AJK will continue to pursue the following funding sources.
- Grant Funding
- Fundraising events