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Amanda's Story

Amanda's First ChristmasAmanda Jones has a rare disorder called Osteogenesis Imperfecta, or Brittle Bone Disease. She is five years old. She has spent more than seven months of her life in the hospital, and has spent a total of almost three months in state-ordered foster care -- prior to her diagnosis -- while her parents were under suspicion for child abuse. Amanda is a cheerful, joyful little girl who loves to ask questions and to help her mother with the chores. Unfortunately, Amanda's bones are so fragile that she cannot ride a bicycle, climb the steps of a school bus, or play on a typical playground.

During the past four years, Amanda's family has moved from economic security to near-bankruptcy. Amanda's mother didn't get to go back to her job as she had planned, partly because of Amanda's hospitalizations. Much of the family's savings were spent to purchase legal representation during the time that Amanda's injuries were thought to be her parents' fault. Six months ago, after their final exoneration at the court hearing, they learned that Amanda might be eligible for medical insurance under a special program called the Home and Community Based Waiver. Three months ago, Amanda gained comprehensive medical insurance coverage under Medicaid. Amanda's dad, who has been unable to change employment because of fear of loss of insurance, can now make a career move which will cut the family's costs for transportation and perhaps allow them to save money toward a specially modified van which can transport Amanda's power wheelchair. Amanda and her family have traveled a long journey in four years.

Amanda at age 4, on the swingThe Jones family receives direct services from four local agencies -- an Early Intervention Agency, a Head Start program, a private nonprofit childcare center, and a hospital -- and also receives case-management services from a local mental-health agency which contracts with the state government to provide case oversight. In addition, the Jones family receives Medicaid support from the state Medicaid office; respite care funding from the state developmental disability agency; family training programs from the Parent Training and Information Center; and health screening and monitoring services from the Visiting Nurse Agency.

Each of these agencies has a different funding stream, a different set of mandates, and a different set of bosses. Services converge upon Amanda and her family, but the decisions that control those services might be local, or state, or federal -- and they might be made with the Jones family's knowledge and participation, or not. In order to advocate for Amanda, her parents have had to learn much more about government and funding than they really wanted to know .

Amanda at the BeachThe Individuals with Disabilities Education Act (IDEA) requires every state to convene an Interagency Coordinating Council with membership from all the agencies and stakeholders who help provide support for Amanda -- and with significant involvement and leadership from parents and families. The IDEA also mandates a similar Council at the federal level.

The Federal Interagency Coordinating Council (FICC) has the duty to advise the federal government on ways to improve the delivery of services to Amanda. The FICC serves as a forum to highlight the innovations and successes that are being achieved every day in local communities around the country.

Amanda and the millions of children like her are the reason the FICC is here.

All photos are the property of the families that donated them. The photos are used on the FICC website with the permission of the family who donated them, and may not be downloaded, reproduced or used in any manner without the prior written permission of the family. For additional information, please review our copyright notice.

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This page last modified on 11-13-2002 (gkp)