Catastrophic Relief Funds or Trust Funds
Many Title V programs function as the “payer of last resort” for services needed by Children and Youth with Special Health Care Needs (CYSHCN) who meet certain clinical and income eligibility guidelines and incur medical expenses that are not covered by public or private health insurance. However, the funding for these services is limited by the size of the state’s block grant or state budget. Several states operate relief or trust funds, which expand the availability of this “last resort” funding. The funds in Michigan, New Jersey, Massachusetts, and Kansas are administered by either state Title V programs or by independent commissions, created by statute with members appointed by the Governor; their funding comes from a variety of private and public sources.
Michigan’s Children’s Special Needs Fund was started in 1944 with a private bequest. Since then, it has expanded through other private donations. The interest from the fund’s investments covers non-reimbursable services such as van lifts, ramps, and air conditioners for CYSHCN.
In New Jersey and Massachusetts (which modeled its program after the one in New Jersey) the Catastrophic Illness in Children Relief Funds are special trusts established through a levy on employers (those who contribute to the state’s unemployment fund) at $1.00 or $1.50 per employee. The funds cover out-of-pocket expenses that are not covered by insurance and exceed 10% of the family’s annual gross income up to $100,000 and 15% for families with income over $100,000. Thus, the term “catastrophic” refers not to the conditions for which expenses are incurred, but rather to the impact on the family’s finances.
The Kansas program blends funds from private charity sources, including a special bequest to cover services for children enrolled in Title V or Supplemental Security Income (SSI) that are not covered by insurance.
Colorado and Georgia operate trust funds that help support the care of adults and children with traumatic brain or spinal cord injuries. The Colorado Traumatic Brain Injury Trust Fund was established in 2002 and is funded by fines for driving under the influence (DUI) and speeding convictions, which generate between $1.5 and $2 million per year. A voluntary board appointed by the Governor oversees the trust, which provides $2,000 per child per year for wrap-around services, other services not covered by insurance and care coordination.
Georgia’s Brain and Spinal Injury Trust Fund is financed by a 10% surcharge on DUI fines and helps to offset the costs of care and rehabilitation services for people who have survived traumatic brain or spinal cord injuries.
