Kurt Oberhausen

To the Honorable Chair and Members of the Committee, My name is Kurt Oberhausen, and I am a resident of Northfield, as well as the father of the most amazing six-year-old daughter, Addison, who lives with Lennox-Gastaut Syndrome (LGS). I am writing today to urge you to support HB 1760. LGS is one of the rarest and most severe forms of epilepsy and requires 24/7 care. That care is only possible because of the Katie Beckett program (HC-CSD). The Katie Beckett program is a lifeline that allows children with the most complex medical needs to remain at home with their families rather than in institutional care. The premiums established in last year’s budget create a sudden, significant financial burden on families. When discussing Medicaid premiums, the conversation often misses the “lost income tax” — the earnings families forfeit when they must reduce work hours or leave the workforce to provide care — that families with medically complex children and rare diseases already pay. According to the National Alliance for Caregiving, nearly half of caregivers report having to reduce their work hours or leave the workforce entirely to manage their child's care. For many families, this results in a loss of 20–30% of their annual household income. Families in the medically complex and rare community face “the caregiving penalty,” which involves medical emergencies and round-the-clock care. This makes traditional career advancement difficult and adds thousands of dollars in out-of-pocket costs for specialized equipment and travel to specialists that insurance does not cover. Under the current HB 2 structure, families could see new premiums of $2,280 to $3,240 per year. For a family already struggling with a reduced income due to caregiving duties, this is not just a "small fee"—it is a barrier to care. For a family living on a caregiver-reduced income, one unexpected medical bill or an increased premium can compromise their ability to fulfill a life-saving prescription. It penalizes middle-income families striving to remain employed while caring for a child with a disability. Beyond the cost, these premiums impose an "administrative tax" on families already drowning in paperwork. Adding a monthly billing requirement creates a new point of failure; a single mailing error or portal glitch can result in a child losing coverage, forcing families to spend hours—or days—of unpaid labor to restore life-saving benefits. HB 1760 corrects a policy that treats healthcare for disabled children as a luxury rather than a necessity. By repealing these premiums and copay increases, you acknowledge the immense financial and personal sacrifices NH families make every day. I ask you to vote Ought to Pass on HB 1760 to ensure Addison and children like her can continue to thrive in their homes and communities without the threat of financial destabilization. Sincerely, Kurt Oberhausen Northfield, NH