The CICRF awards approved for the first six months of this fiscal year will help 146 eligible families pay for uncovered expenses associated with their child’s illness.

“This represents aid to 37 additional families amounting to $1 million more for the same time period last year. This alone shows us the need growing at an astronomical rate.” stated Department of Human Services Commissioner, Jennifer Velez. “I am proud to say that New Jersey can provide this safety net through CICRFC – unique in the United States - for so many families when they face catastrophic medical costs for their child.” 

Since its creation in 1989, the Catastrophic Illness in Children Relief Fund has awarded more than $108 million to over 4500 New Jersey families, in every county of the state. “By helping families maintain their family life while caring for a sick child and coping with mounting medical bills, the fund does almost as much for the family’s state of mind as it does for their finances,” said Jane Lorber, Chairperson of the Commission. 

Families of any income may qualify, and the fund does not limit coverage to specific diseases or diagnoses.  Eligible medical and related expenses are those not fully covered by insurance, state, or federal programs, and include hospital and physician bills, medications, medical equipment, psychiatric care, home health care, and specialized home and vehicle modifications. 

“We define catastrophic in terms of the economic impact the child’s illness has on the family.  We look at how high the uncovered medical expenses are compared with the family income,” said Ralph J. Condo, Executive Director of the Fund.  “A family may have health insurance, but coverage often is inadequate, and mounting bills can quickly become catastrophic for a family.”  Most families that have been helped by the fund have been working parents with health insurance, but their out-of-pocket expenses were still greater than 10 percent of their income.  “The fund helps families weather a financial crisis and return to the routine responsibilities of their lives,” said Condo. 

The fund is collected from an annual surcharge of $1 per employee levied on all employers who are subject to the New Jersey Unemployment Compensation Law.   

A family may qualify for the fund’s help if a child’s unreimbursed medical and related expenses exceed 10 percent of the family’s income up to $100,000 plus 15 percent of any excess income over $100,000.  The child must have been 21 years or younger when the medical expenses were incurred, and families must be state residents.  Expenses must have been incurred during a previous 12-month period, and expenses dating back to January 1988 will be considered. 

While the legislation that created the fund protects the anonymity of families applying for help, several families who have received grant awards from the fund were willing to share their experience at today’s ceremony.   

Families in Attendance:

Michael and Donna Henry of Bordentown, Burlington County purchased a specialized, modified van for their son Sean, who is now 15 years old.  Sean was born with a neurological disorder of the brain and nervous system and must use a wheel chair for mobility as well as requiring assistance with all activities of daily living.   In order to access their home with the wheel chair, his family purchased a portable ramp to transport the wheel chair into the home. Although insured, the family realized that these types of expenses were not covered by insurance but would be considered by the Fund. The Commission was able to assist this family with an award of over $25,000. 

Louis and Susan Varilias of Succasunna, Morris County are previous applicants to the Fund, and have applied several times on behalf of their son Louis, now 18. Louis has a progressive, degenerative neuromuscular disorder that requires him to use a motorized wheelchair.   Due to the severity and complexity of his illness Louis must see multiple specialists. In order to transport him safely and effectively, his parents purchased a modified van to accommodate his specialized transportation needs. Since the van is a once in a life time expense, in this application the Commission was able to help the family with the cost of the van modifications, physician and therapy co-payments and the cost of a ramp attaching to an existing deck- providing an additional form of access and egress.  This award totaled $32,740 to alleviate this family’s expenses. 
 
Monica Tossas of Elizabeth, Union County was struggling to transport her son Bryan De Jesus due to all of his complex medical needs. Bryan, who is now 7 years old, has a neurological disorder as well as a seizure disorder, asthma, reflux disease and severe developmental delays. Bryan sees several specialists and receives multiple therapies, requiring Ms. Tossas to purchase a modified vehicle to accommodate his specialized transportation needs.  The Fund was able to assist with those costs with an award of over $39,000. 

Bonnie Maisto of Middlesex, Middlesex County, was facing the challenge of transporting her son Aaron, now 13 years old, as his neuromuscular disorder progressed. As single mother, who has remained on good terms with her ex- husband, she also realized how important it was for Aaron to see his father consistently. So the modified vehicle not only helps Aaron getting to his required medical appointments and therapies, it also helps to keep his family intact in spite of the fact that they no longer all live under one roof.  The Commission was able to assist in this endeavor with an award of $37,000 toward the cost of the modified vehicle.