Department of Human Services | CATASTROPHIC ILLNESS IN CHILDREN RELIEF FUND COMMISSION ANNOUNCES ANNUAL AWARDS FOR FAMILIES
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TRENTON, NJ – Today, the Catastrophic Illness in Children Relief Fund Commission (CICRFC) celebrated 28 years of helping New Jersey families struggling to pay uncovered medical expenses for their children and announced its fiscal year 2016 grant awards at its annual meeting.    The CICRFC is an independent agency allocated within the New Jersey Department of Human Services and is the first of its kind in the nation.

The Commission has approved nearly $7 million in grants to 369 eligible applicants for fiscal year 2016 from the Catastrophic Illness in Children Relief Fund.  During difficult economic times, the Fund is an essential safety net for many families struggling to care for a child with special health needs.

“The Relief Fund serves as a lifeline for families struggling to balance the medical needs of their child with financial security,” said Department of Human Services Acting Commissioner, Elizabeth Connolly. “These grants are critical to relieving families from burdensome debt so they can focus on their child’s health.”

The Fund is supported by the state’s business community.  All NJ employers pay $1.50 per employee surcharge each year to support the Fund.

Janice Prontnicki, MD, Commission Chairperson and public member, noted that since 1989, the Commission has approved grants totaling over $169 million for over 8,059 families.  “The families have their own unique stories to tell but are not unlike most New Jersey families who work hard to pay their bills. 

Yet when faced with the daunting challenge of caring for a child who is ill and dealing with mounting medical bills, their daily life can be overwhelming.” Prontnicki 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 successful and rewarding,” said Claudia Marchese, Executive Director of CICRFC.

Families of any income level 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 condition and covers hospital and physician bills, medications, disposable medical goods, medical equipment, medically related home and vehicle modifications, transportation, and home care costs.

Children 21 years or younger are eligible for assistance.  To apply, families must be legal New Jersey State residents for at least 3 months.  Expenses must have been incurred during a previous 12-month period.  The Fund is a reimbursement program and does not help with prospective expenses.

“We define ‘catastrophic illness’ in terms of the economic impact a child’s diagnosis has on the family,” said Marchese.  “A family may have health insurance, but coverage can still be inadequate when a child has a serious illness or injury. 

The Fund can help families avoid financial crisis, such as bankruptcy or foreclosure, and focus on caring for their children.”

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 regarding 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.  Also, visit the Fund website at www.njcatastrophicfund.org

Families in Attendance on June 29, 2016:

The Welsh Family of Camden County, Collingswood, NJ

Isaiah Sutter is a fourteen-year-old boy diagnosed with both cerebral palsy and autism. He is one of two surviving triplets. Because Isaiah uses a wheelchair, his mother, Ms. Amy Welsh, desperately needed to purchase a modified vehicle in order to travel with him. Unfortunately, she was initially unable to secure a loan. In collaboration with the vehicle dealership and Catastrophic Illness in Children Relief Fund Commission (CICRF), Ms. Welsh was able to secure a vehicle for her son. The family also received assistance to create a wheelchair accessible bathroom for Isaiah. Ms. Welsh was experiencing significant challenges when assisting Isaiah with bathing. She participated in a special program, the Camden County Catastrophic Illness in Children Relief Fund Bridge Loan program, which the Camden County Board of Chosen Freeholders established in 2015. In conjunction with CICRF, residents of Camden County are able to apply for a secured loan, through the Camden County Improvement Authority, to be used for their children’s medical expenses. Families may receive a loan of up to $5,000. The family also received assistance with the cost of adding a platform lift to the exterior of their house, so that Isaiah can now safely enter and exit his home. The family received a total award this fiscal year of $76,640.

The Goebel Family of Burlington County, Cinnaminson, NJ

Thirteen-year-old Garrett Goebel is diagnosed with Osteogenesis Imperfecta, a bone disorder that causes brittle bones and makes those affected by the condition extremely susceptible to fractures. Individuals diagnosed with this condition also experience problems with their connective tissue, which can often affect one’s ability to walk independently. Garrett’s parents, Michael and Carol Goebel of Cinnaminson, widened doorways throughout their house. Now Garrett can maneuver around his home safely, while using his wheelchair.  Due to coinsurance and deductibles, the family also required assistance with hospital and physician charges. In addition, the family received assistance with the cost of modifying their vehicle to accommodate Garrett’s mobility needs. The family received a total of $35,669 this year.

The Adamo Family of Bergen County, Paramus, NJ

Seven-year-old Daniella Adamo is diagnosed with intractable epilepsy, and due to her condition, she experiences seizures routinely. In addition, she is diagnosed with microcephaly, which is a serious neurological condition when a child’s head is significantly smaller than other children of the same age. Daniella also has hearing and vision loss and uses a communication device to communicate with others.  CICRF has been able to assist the family with a total of five applications. Most recently, CICRF helped Joseph and Deanna Adamo with the cost of the specialized formula that is Daniella’s primary nutrition. The family also received help with speech therapy, occupational therapy, and physical therapy copayments. In the past, CICRF assisted the family with the cost of modifying their home for their daughter, to include a wheelchair accessible bedroom and bathroom. Their total award this year was $13,138.

The Meola Family of Morris County, Randolph, NJ

Fourteen-year-old Nicholas is diagnosed with Duchene Muscular Dystrophy, a progressive, degenerative muscle disease that usually affects boys, and causes muscle weakness and wasting. CICRF has assisted the family with two applications. Although the family held fundraisers to help with Nicholas’s medical expenses, the amount they received from the community did not cover the full cost of purchasing him a modified vehicle. In addition, the family’s medical insurance did not fully cover the cost of durable medical equipment for Nicholas, including a power wheelchair and a shower chair.  CICRF was able to assist with the remaining vehicle expenses and the cost of the durable medical equipment. The family also needed help with physician charges not fully covered by their insurance and with the cost of a large home modification. The family widened doorways so that Nicholas is now able to use his wheelchair throughout the house. They also added an accessible bathroom to the first floor of their home. The family’s total award was $70,824.

The Withers Family of Somerset County, Bridgewater, NJ

Christopher Jernigan is a 20-year-old young man who was diagnosed with a developmental anomaly known as maxillary hypoplasia, which is an underdevelopment of the bones of the upper jaw. This skeletal condition severely affected his ability to eat and speak, and it affected his appearance.  He underwent extensive corrective surgery during 2013. The family was not aware that the surgeons were out of their provider network until this after the surgery. Although the family obtained pre-certification from their medical insurance carrier for the procedure itself, the surgeons who performed the surgery were paid at a rate determined by the family’s health insurance. Therefore, the surgical charges were not completely covered by the family’s insurance, and the family incurred significant debt for the cost of the treatment that their son required.  The family received a total award of $59,672.

The Epstein Family of Monmouth County, Matawan, NJ 

Declan Epstein was born in 2014. Before his birth, it was determined that Declan only had one kidney. Physicians also noticed a slight blockage in his colon, but were unaware of the extent. Shortly after birth, the attending pediatrician notified the family that he was born with an imperforate anus, and Declan was immediately transferred to another hospital, via ambulance, and admitted to their neonatal intensive care unit (NICU). While at the NICU, it was determined that Declan was also born with a tethered spinal cord. Specialists noted that although surgical intervention was not initially necessary, his body will need to grow more to determine the severity of the situation. Declan underwent his first surgery when he was only 4 days old, in order to correct the anatomical, gastrointestinal issues. Many more surgeries would follow. During 2014 and 2015, a medical team that included 12 specialists treated Declan. As a result, his parents incurred significant medical expenses, including copayments and deductible charges, for Declan’s treatment. CICRF was able to assist, and awarded the family with a total of $6,920.

The Rivera – Gonzalez Family of Essex County, Newark, NJ

Christopher Gonzalez is a twenty-year-old young man who has cerebral palsy, a neurological condition that affects body movement, balance, and muscle coordination. He is also diagnosed with hydrocephalus, which is an accumulation of fluid on the brain. In addition, Christopher is diagnosed with visual impairment. He uses a wheelchair, and his family needed to purchase a modified vehicle in order to transport him safely. CICRF assisted the family with the cost of purchasing a modified van. They received an award of $51,136

 
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