Thirty medically complex children stuck in CT hospitals waiting for home health care cost state over $100 million

Last week, MAPOC’s Complex Care Committee heard from the three remaining home health agencies that provide care for Connecticut’s most medically complex children. We heard about the massive challenges facing both families and agencies. Most parents caring for medically complex children are single mothers due to high divorce rates, who cannot work because of inconsistent home nursing care. Bankruptcies are common. The stress falls on the entire family including siblings.

Conditions affecting medically complex children and adults needing Continuous Skilled Nursing at home include Cerebral Palsy, ALS and Muscular Dystrophy. Care includes tracheostomy care, feeding tubes, ventilator-dependence care, and seizure care and prevention. At any given time, about 30 children remain in hospitals despite being ready to go home because there aren’t enough trained Continuous Skilled Nurses to meet the need. Others still at home, languish on wait lists cycling in and out of the hospital, because families are stretched to the limit. The agencies currently care for about 300 children, but they can only cover 75% of authorized hours. Only a limited number of nurses have vent and trach experience. This all costs the state over $100 million each year in preventable costs. Each child who sits in a hospital waiting for Continuous Skilled Nursing care, costs the state $3.3 million each year in extra hospital costs while home care would cost $319,094. Getting just one child back home, where they belong, saves the state $3 million each year.

The resource challenges finding and retaining enough trained Continuous Skilled Nurses have driven other agencies out of business and are threatening these three. Most of the care is covered by Medicaid (74%) paying the lowest rates. Annual income for LPNs who provide the majority of care for medically complex children is $10,000 less in home care than at Skilled Nursing Facilities; RNs make $25,000 less each year in home care than in hospitals. NJ and MA increased Continuous Skilled Nursing Medicaid payment rates and saw an increase in capacity and shorter waiting lists.