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TRENTON, NJ - The Catastrophic Illness in Children Relief Fund Commission (CICRFC) today announced at its annual meeting that it has approved over $6 million in grants this fiscal year to help pay medical costs not covered by insurance for 363 New Jersey families with sick children.The Fund is supported by New Jersey businesses, which contribute $1.50 per employee for the CICRFC-dedicated account. During difficult economic times, the Commission is proud to offer assistance to many struggling New Jersey families.

“These families have their own unique stories to tell but are not unlike most New Jersey families who work hard to pay their bills.  When faced with the daunting challenge of caring for a sick child and dealing with mounting medical bills, daily life can begin to feel overwhelming,” said Jane Lorber, CICRFC’s chairperson, while noting that since 1989, the Commission has approved grants totaling over $137 million for over 5,763 families.

Department of Human Services Commissioner Jennifer Velez praised the dedication of Commission members and the resolve of parents who are caring for their chronically or catastrophically ill children. “This fund is one of the best programs our state offers.  I’m encouraged to see that the Fund provides hope for so many New Jersey families through the successful collaboration of New Jersey citizens, the business community and state government,” she said.

Several families who have benefited from the Fund and now serve as volunteers on the CICRFC Family Advisory Committee also attended the meeting. “I would like to personally thank those families here today who continue to extend themselves despite their own difficult circumstances.  Your efforts to assist other families have helped make the program so successful and so rewarding,” said Commission vice-chairperson, Janice Prontnicki, MD.

According to Claudia Marchese, the Commission’s Executive Director, families of any income may qualify for financial help if a child’s unreimbursed medical and related expenses exceed 10 percent of the family’s annual income up to $100,000 plus 15 percent of any income over $100,000.

The Fund does not restrict coverage to a specific diagnosis or disease and covers hospital and physician bills, medications, disposable medical goods, medical equipment, medically related home and vehicle modification and transportation, and home care.
Children 21 years or younger are eligible, and families must be state residents. Expenses must have been incurred during a previous 12-month period.  Expenses dating back to January 1988 will be considered.  

This year the Fund is proud to have helped several young adults with awards for uncovered medical expenses, thus making a significant impact on this group in transition between the ages of 18 and 21.

“We define ‘catastrophic’ in terms of the economic impact a child’s illness has on the family,” said Marchese.  “A family may have health insurance, but coverage can be inadequate when a child has a serious, expensive illness or injury.  The Fund can help families avoid financial crisis and return to the routine responsibilities of life.”

While legislation creating the Fund protects the anonymity of families who have received grant awards, several families attended the annual meeting to share their experience as a way of encouraging other families in need to apply for assistance.  (See family profiles below.)

For more information on the Catastrophic Illness in Children Relief Fund, call Claudia L. Marchese, Executive Director, at 609-292-0600 or the Family Information Line, 1-800-335-FUND.

Families in Attendance on June 29, 2011

Glenn and Janet Swindell of Jackson, Ocean County were fully insured when they realized they needed to purchase a modified vehicle and to make several accessibility modifications to their home to accommodate the needs of their son Miles, (now 10 years old). Miles has multiple neurological conditions which prevent him from walking independently and also for caring for his own personal needs. The family received assistance from the Fund to offset the costs of a modified vehicle and modifications to make their home more accessible and also provided ease of care giving. They received an award of over $51,000 to assist with these uncovered costs.

Lawrence and Mary Tyson of Hazlet, Middlesex County, were insured when their daughter Shanna (now 19 years old) required long term treatment for a chronic health disorder. In addition to hospital and physician bills, they had significant expenses for outpatient care and travel.  The family received an award of over $32,000 to help with their uncovered expenses. They also received an award of over $35,000 for a previous application year and are grateful that the Fund is available for families to apply annually.

Taeho and Eunice Shin of RiverVale, Bergen County, were insured but had to adapt their home to the needs of their son Timothy, (now 21 years old) by adding an accessible bathroom for his personal care needs. Timothy has a neurological disorder which requires him to use a wheelchair and that he receive assistance with all activities of daily living. The family received an award of $4,500 to assist with the cost of the specialized bathroom. They had also received previous awards for a modified vehicle and other uncovered medical expenses.

Lolita Allen, of Willingboro, Burlington County, needed to purchase a specialized, modified vehicle to be able to transport her daughter Jaila, (now age 5 ½ years old) safely and comfortably. Jaila has a neurological condition and seizure disorder as well as feeding difficulties. She requires total care for all activities of daily living and specialized tube feedings.  The Fund was able to assist this family with an award of over $40,600 to help offset the cost of the modified vehicle.

Estrella Castellano and Roger Orihuela of Jersey City, Hudson County, were insured, but still had significant balances for medical services provided for their daughter Crystal (now 14 years old). Crystal has a form of cerebral palsy as well as orthopedic issues with her back. Nonetheless, with the help of intensive physical and occupational therapies, she has become an outstanding athlete in track and field, swimming and rock climbing.  The Commission was able to assist the family with an award of over $2,400 to assist with those uncovered expenses. They were also helped by the Fund for a previous year of uncovered medical expenses.

Kenneth and Deborah Wallace of Merchantville, Camden County, were purchasing their health insurance directly, as Mr. Wallace is self employed.  Their son Luke,   (now 11 years old) has a neurological and seizure disorder, as well as visual impairment.  He requires total care and is fed via gastrostomy tube. When the family found out about the Fund, they submitted 11 applications concurrently, one for each year of uncovered expenses. As of this writing, 10 of those applications have been found eligible by the Commission and they have awarded the family over $60,000 in reimbursement for their out of pocket uncovered medical expenses.

Anthony and Michelle Bonanno of West Caldwell, Essex County, were insured, but still had significant out of pocket expenses for medical care for their daughter Serena (now eight years old). Serena has a neurological condition with seizures and requires assistance with all activities of daily living. She uses a wheelchair for mobility. This family received two awards from the Commission for over $31,000 for uncovered medical expenses as well as for a modified van. In a subsequent year, they received over $38,000 for uncovered medical expenses as well as for a home modification to increase accessibility and ease of care.

George Avirappattu and Jaya George of Basking Ridge, Somerset County, were insured when their son Jacob (now 10 years old) sustained a serious accidental head injury. They were faced with the massive undertaking of making their home accessible for Jacob’s wheelchair and other equipment, as well as providing him with safe, reliable transportation that would accommodate his wheelchair.  The Commission was able to assist this family with an award of over $50,000 to help offset these major expenses.

David and Donna Schoenhofer of Mt. Laurel, Burlington County, have custody of all their grandchildren, including 15 year old Alexis who has a form of hydrocephalus and a seizure disorder. Alexis uses a wheelchair for mobility and her family purchased a modified van to accommodate her specialized transportation needs.  The Fund was able to help with an award of over $40,000 to assist with offsetting the expense of the vehicle.

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