In many states, Title V operates as a payor of last resort for CYSHCN. Title V can assist with payment for services and supplies not covered by Medicaid/CHIP, private insurance, and other funding sources. Some states offer programs to pay for specific services or items like respite care or durable medical equipment that are often not covered in full by insurance, and others offer broader financial assistance programs that provide reimbursement to families based on income level, insurance status, and diagnosis. All gap-filling programs contribute to meeting families’ unmet needs with the aim of reducing family financial hardship and improving the health of CYSHCN.
Respite care is temporary, short-term care for a person with disabilities, chronic health conditions, and/or complex health conditions that provides relief for a family caregiver. Respite care may be provided by another family member, a friend, or a paid employee. Respite care can be provided on a temporary basis, emergencies, or long-term, in a variety of settings including the family home, respite centers, or residential care facilities.
The CYSHCN program in Arizona contracts with Ryan House to provide respite and palliative care care at no cost to families. Ryan House provides short-term, overnight respite care in a home-like environment staffed with healthcare specialists and highly trained volunteers. Families can access 28 days of respite care per year free of charge In 2021, Ryan House provided care to 60 families. Additionally, Arizona funds Ronald McDonald House Charities of Phoenix and Southern Arizona, through Title V funding to assist in the operation of three houses for families in need of housing while their child is receiving care at several of the children’s hospitals in Phoenix and Tucson. In 2021, Ronald McDonald House provided a total of 2796 nights of accommodation for 111 families of CYSHCN obtaining hospital care in the Phoenix and Tucson metropolitan areas.
The Arkansas Title V Children with Chronic Health Conditions program provides families raising CYSHCN under age 18 who receive SSI or TEFRA with up to $1,000 to use for respite care. Need and financial eligibility are taken into account for this first come, first served program.
Durable Medical Equipment
The Title V agency in Arkansas covers costs of wheelchairs for CYSHCN who are not enrolled in Medicaid and strollers that are not covered by Medicaid. They also pay for wheelchair ramps at children’s homes, and they partner with a community organization that redistributes and resells equipment such as bath chairs.
Massachusetts’ Title V-operated Catastrophic Illness in Children Relief Fund (CICRF) provides financial reimbursement to eligible families caring for CYSHCN with medical expenses not covered by a private insurer, federal or state assistance, or any other financial source. To qualify, expenses must exceed 10 percent of the family’s yearly income. Expenses that may be covered by the fund include costs of hospital care, travel to medical appointments, home and vehicle modifications, and medical equipment and supplies, among others. This program is funded through state employer taxes.
The CYSHCN program in Virginia partners with the Virginia Department of Education, the University of Virginia Care Connection for Children (CCC) program and the Virginia Department of Health Early Hearing Detection and Intervention program to operate the Hearing Aid Loan Bank. The program provides loaner hearing aids and FM systems to children up to age 18 while they wait to obtain hearing devices through insurance or another source.
Puerto Rico’s Funds for Services Against Remediable Catastrophic Illnesses helps families fund major medical expenses, such as when a child needs to travel to the mainland United States to receive care.
Montana’s CYSHCN program maintains a financial assistance program that covers out-of-pocket expenses for medical and enabling services such as care coordination, supplemental therapy sessions, assistive technology, and durable medical equipment. Families with incomes below 300% of the Federal Poverty Level are eligible for up to $2,000 of funding per child per year.
The North Dakota Department of Health and Human Services funds the Financial Coverage Program, which provides financial assistance to families of CYSHCN who are uninsured or underinsured. This program covers up to $5,000 of diagnostic and treatment services per child per 12-month enrollment period. Financial eligibility criteria change from year to year. In 2022, eligibility for the program began at 185% of the Federal Poverty Level, and eligibility limits are updated each May.
In Idaho, The Title V Block Grant funds and operates the Children’s Special Health Program (CSHP), a statewide financial assistance program for uninsured children with qualifying medical conditions requiring long-term multidisciplinary medical treatment and rehabilitative measures to improve ability to function. Medical conditions that may qualify for CSHP include: cardiac, craniofacial, neurological, plastic/burn, cleft lip/palate, cystic fibrosis, orthopedic, and phenylketonuria. Children with cystic fibrosis (CF) and phenylketonuria (PKU) are eligible for the program regardless of whether they are insured through another source. The CSHP provides financial support to residents of Idaho, from birth to eighteen years of age. The extent of CSHP financial support is determined by a sliding scale based on a family’s annual income and family size and is subject to annual payment limits per client and medical condition.
Wyoming contributes state funds to the state’s Children’s Special Health (CSH) Program, which provides care coordination and limited gap-filling financial assistance to eligible families. Public health nurses work specifically with the Northern Arapaho and Eastern Shoshone tribes to offer this service. Title V funds three positions that work on eligibility for the CSH program.
Kansas’s Title V-operated Direct Assistance Programs (DAPs) for CYSHCN help families pay for expenses such as medications; medical equipment and supplies; travel; co-payments, deductibles, and coinsurance; hemophilia treatment; medical services for uninsured children; orthodontic treatment services; metabolic products; and caregiver relief for children with a complex medical condition that requires specialty medical and respite care. Families can select up to 2 DAP categories to receive funds from per qualifying year.
Arizona’s CYSHCN program contracted with ZOIA Pharma LLC to support the Phoenix Genetic Program of Phoenix Children’s Hospital. This program provides prescribed metabolic formula for uninsured or underinsured children and adults at no charge to the patient. In 2021, Phoenix Genetic Program of Phoenix Children’s Hospital provided 482 metabolic formulas to 27 individuals.
Idaho’s Children’s Special Health Program (CSHP) funds medical food and medical formula for PKU participants. CSHP works with multiple medical food and medical formula vendors to ensure access to a variety of options for its PKU participants. CSHP spends approximately $200,000 per year on medical food and formula. Using Title V Block Grant funds, CSHP subgrants with St. Luke’s Clinic Genetics and Metabolics to provide nutritional support and clinic visits with a registered dietitian and biochemical geneticist. Pediatric PKU participants (0-17 years of age) enrolled in CSHP are eligible for financial assistance with medical formula, medical foods, clinic visits, nutritional support, and phenylalanine (Phe) testing through a contracted laboratory. Adult PKU participants (18 years of age and older) are eligible for clinic visits, nutritional support, and Phe testing (with or without insurance). Maternal PKU participants enrolled in CSHP receive the same services as a Pediatric PKU participant up until six weeks postpartum.
Extending CYSHCN Program Reach
In 2019, the Illinois CYSHCN program started a Core Program Enrollment and Resource Team to investigate needs across the state and improve the availability of program staff. The aim of this team is to assist CYSHCN and their families with resource needs who are not already enrolled in a care coordination program through the CYSHCN program. The team’s work resulted in expansion of staff to three additional offices. The state’s Core Program for CYSHCN supports financial needs not covered by insurance such as therapy, specialized equipment, and transportation related to medical appointments.
Texas Title V is involved in the Texas Vendor Drug Program, which reduces costs for medications covered by state health programs, including Medicaid, CHIP, and the CYSHCN program. As part of the Vendor Drug Program, contracted drug manufacturers and labelers provide rebates for a portion of the cost of medications the CYSHCN program purchases for children enrolled in the program.