Catastrophic Illness in Children Relief Fund Commission Celebrates 20 Years of Service to NJ Families and Announces Annual Awards PRINCETON, NJ – Holding its annual June meeting, the Catastrophic Illness in Children Relief Fund Commission (CICRFC) today had special cause for celebration as it recognized 20 years of helping New Jersey families with their children's uncovered medical expenses. Held in conjunction with its Annual Family Advisory Meeting, at which it announces the total awards for the fiscal year, the CICRF luncheon took place at the Governor's Mansion, Drumthwacket. The Commission announced that it has approved over $7.1 million for 309 families this fiscal year alone.
The Commission gave a special acknowledgment to Governor Jon S. Corzine for his hospitality and continuous support of the program. CICRFC also honored former Governor Donald DiFrancesco with a Stewardship Award. DiFrancesco sponsored the enabling legislation which created the CICRFC, and his continuous efforts assured the creation of the unique program, the first of its kind in the nation. CICRFC now serves as a model for the Massachusetts CICRFC and for the program in Connecticut which is still being constructed.
“It is indeed an honor to have other states emulate New Jersey 's program,” said DiFrancesco. “I am thrilled to receive this award and to be witness to all the incredible good that CICRFC has accomplished in the past twenty years.”
Also acknowledged were Commission Members who serve uncompensated to determine final awards and disbursements to families and vendors, as well as past and present Executive Directors, Maryann Whiteman and Ralph J. Condo, respectively. Most importantly, the recipient families who helped publicize the Fund by participating in various public information activities were honored for their dedication and commitment.
Keynote speaker, Kelly Rouba, a former Fund recipient, former Ms. Wheelchair NJ, community activist and journalist, spoke of the impact the Catastrophic Illness in Children Relief Fund had on her life 10 years ago, increasing her independence and allowing her to go to college and participate in other activities.
Jane Lorber, CICRFC chairperson and public member, noted that since 1988, the Commission has approved grants totaling over $115 million for more than 4,800 families. She explained that the families have their own unique stories to tell, but in many ways are not unlike most New Jersey families. They work hard and pay their bills. “But 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,” Lorber said.
Department of Human Services Jennifer Velez praised the dedication of the Commission members and noted how the Fund eases these overwhelming struggles of parents who need financial relief. “This Fund is one of the best programs that our state offers,” said Commissioner Velez. “I'm heartened to see that the Fund is available to provide hope for so many New Jersey families with nowhere else to turn. This program also exemplifies the partnership between New Jersey citizens, the business community, and state government.”
Also attending the meeting were some of the families who have benefited from the Fund and now serve as volunteers on the Commission's Family Advisory Committee. “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-Chair Janice Prontnicki, MD.
According to Ralph J. Condo., executive director of the Commission, 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. It covers hospital and physician bills, medications, and disposable medical goods and medical equipment, as well as home care, medically-related transportation, home and vehicle modifications.
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. The Fund is collected from New Jersey employers via an annual surcharge of $1.50 per employee.
“We define ‘catastrophic' in terms of the economic impact a child's illness has on the family,” said Condo. “A family may have health insurance. But coverage can be inadequate when a child has a serious, expensive illness or injury. With the help of the Fund, families can avoid a financial crisis and return to the routine responsibilities of their lives.”
While legislation creating the Fund protects the anonymity of families who have received grant awards, several of the families in attendance were willing to share their experience as a way of encouraging other families in need to apply for assistance. Many of these families also have participated in public information activities, such as agreeing to be interviewed for television, newspaper and magazine articles. Some even had Fund information placed on their employers' website and participated in the making of general service announcements (GSA) which run on NJN Public Television. Below are family profiles.
Families planning to attend on June 20, 2008:
Matthew and Marilyn Coppola of Randolph, Morris County , have twice benefited from the Fund. Their son Matthew, now 20, has cerebral palsy and a seizure disorder. He uses a wheelchair for all of his mobility needs. After applying for two subsequent years of expenses, which included home modifications and a modified van, the family received awards totaling over $100,000 to assist them with these extraordinary costs.
According to the Commission, Matthew and his family have gone to extraordinary lengths to help promote the Fund, appearing on a local television show sponsored by Senator Anthony Bucco in Morris County . Mrs. Coppola was instrumental in having the Fund's information and her own experience posted to the Intranet of her employer, a major NJ pharmaceutical company. Several hundred employees saw this information on their Intranet home page. She has also personally assisted several families with completing the application and forwarding it on to the CICRF state office.
Richard and Alicia Brickner, of Clayton, Gloucester County , were insured when their daughters, then ages six and three, required hospitalization within the same year. Abbegale, six, had a severe upper respiratory condition and was diagnosed with asthma. Three-year-old Allison had a kidney disorder and required surgery. After these two major events and following payment by their insurance, the family was left with significant out-of-pocket expenses. The Fund awarded this family $5,492 for Abbegale and $8,144 for Allison.
Abbegale, now 9, and Allison, now 7, joined their parents to promote the Fund by appearing in a GSA which ran on NJN TV. They were also part of a segment of Prime Time Saturday (WPVI, Philadelphia ) with two other families.
Donald and Mary DeSorte of Atco, Camden County , were insured when their son Rocco was born with a chromosomal abnormality resulting in multiple complications. After surgery, many doctor visits and tests, the family had significant out-of-pocket expenses following insurance payment. They were awarded $4,900 to reimburse these uncovered expenses.
Rocco (now 6 years old) and his family helped publicize the Fund by filming a segment of Prime Time Saturday (WPVI, Philadelphia ) in their home. Their willingness to forego their anonymity made it possible to reach hundreds of New Jersey families with information on the Fund.
Peter and Carrie Foley of Farmingdale, Monmouth County, were insured when their son Nicholas was born with multiple problems, including a cleft lip and palate, as well as cardiac and respiratory problems. His multiple surgeries and hospital stays resulted in over $400,000 in uncovered medical bills, which were paid by the Fund for the year 2002. The family knew that they could reapply annually and subsequently received over $32,000 for uncovered medical expenses in another year. The Foley's are one of the “star families” of the Fund's current GSA running on NJN Public Television.
Darnell and Evelyn Hannah of Neptune, Monmouth County, knew they would be faced with home modifications when they adopted their twin daughters Passion and Porsche in March 2002. Passion, then eight years old, had cerebral palsy as well as developmental delays, requiring use of a wheelchair for mobility and assistance with all activities of daily living. Although insured by Medicaid, the family realized that this type of non-traditional out-of-pocket expense could be considered by the Fund. In their most recent application, the family converted a downstairs room into an accessible bedroom with specialized bathroom to facilitate access and ease of care. They received $25,000 for this renovation. The subsequent year's $37,000 award paid for a modified vehicle for transporting Passion, now eleven.
The Hannah family is another “star family” and can be seen on NJN TV in a current GSA, which was also nominated for an Emmy Award.
Robert and Lynda Height of Tabernacle, Burlington County , had health insurance through Robert's employer but incurred non-covered medical expenses for their daughter, Christine. At age seven, Christine was diagnosed with a progressive neurological disorder which impedes her coordination and ability to walk, requiring her to use a wheelchair. After she reached seventeen, her parents purchased a modified vehicle with hand controls and a wheelchair lift that enabled their daughter to drive independently. They also modified their home to accommodate her needs. CICRF helped the family offset these costs, which totaled $59,000.
Christine (now 28 and living in Virginia ) and her family helped the Fund by participating in the filming of a video which is shown to providers and interested groups, as well as parents. They also appear on the Fund's website www.njcatastrophicfund.org. Mrs. Height has also referred several families to the Fund, helping them with their applications and offering encouragement.
Michael and Donna Henry of Bordentown, Burlington County, purchased a specialized, modified van for their son Sean, now 16 years old. Sean was born with a neurological disorder of the brain and nervous system and must use a wheel chair for mobility. He also requires assistance with all activities of daily living. To make their home wheelchair accessible, his family purchased a portable ramp for entrance to 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 assisted the Henry's with over $25,000.
This family agreed to forego their anonymity and attended the Annual Christmas event with the Governor. They were subsequently interviewed and featured in a local newspaper article about their positive experience with the Fund.
Aaron and Wanda Saunders of Burlington, Burlington County, had health insurance for their 12-year-old daughter Erin. Erin, who has cerebral palsy, uses a wheelchair for mobility. She requires special accommodations for medically-related travel, as well as assistance with her daily living activities. Her family purchased a modified van for her transportation and also installed a stair lift in their house, giving Erin access to all areas of their home. The Fund assisted the family with more than $34,000.
Now 15, Erin and her family participated in an interview for Families Magazine and were instrumental in getting the word out about the Fund, especially to families who have children with a disability.
Frank and Kerry Rouba of Mercerville, Mercer County, purchased a modified vehicle for their 18-year-old daughter Kelly, who has Juvenile Rheumatoid Arthritis. This van allowed Kelly to participate in all activities considered “normal” for her age group, such as going to college, driving to medical appointments, socializing with friends, and shopping with her family. The Commission awarded $22,959 to pay for the modified vehicle.
As keynote speaker for today's event, Kelly confirmed just how much the van meant to her and her family. Kelly and her family have been instrumental in publicizing the Fund. Last year she wrote an article on Financial Assistance Programs for Abilities Magazine , featuring the Fund.
Louis and Susan Varilias of Succasunna, Morris County, have applied to CICRF several times on behalf of their son Louis, now 19. 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 special transportation needs. Since the van was a one-time expense, in a subsequent application the Commission helped the family with $32,740 for the van modifications, physician and therapy co-payments, and a ramp attaching to an existing deck for additional accessibility.
This family was unable to attend the Christmas press event last year but sent a wonderful letter of appreciation which was read aloud at the event. They also did an interview with School Leader Magazine , a publication of the NJ School Boards Association, circulation 7,500.