The AHCA would devastate the most vulnerable: people with intellectual disabilities and complex medical needs

The American Health Care Act, which was passed by the House of Representatives on May 4, would have a devastating impact on the lives of individuals with intellectual and developmental disabilities. They are some of our nation's most vulnerable citizens.

While most discussion around the AHCA has focused on insurance access and pre-existing conditions, little attention is paid to how the bill would make the most significant and dramatic changes to the Medicaid program since its inception. Instead of paying the cost of all needed care, the bill would impose per capita caps on federal funding. A per capita cap means that the federal government would determine an amount paid to each state each year for each person enrolled in Medicaid. The same amount would be paid to the state for each individual enrolled; however, the costs associated with each individual vary greatly as a function of that individual's needs and the services they require.

These caps would create a dangerous and unstable situation for individuals with intellectual and developmental disabilities who receive supports and services via Medicaid funding. Caps would not increase to reflect rising health care costs or to reflect increases from people aging into needing more long-term supports and services. Per capita caps will reduce amounts and quality of services and increase the size of the service waiting list. States would be forced to find funding to make up for reduced federal support, a concerning prospect in a state currently facing a $1.2 billion deficit where fiscal year General Fund collections are currently $1.2 billion below estimate. And if funding cannot be found, the inevitable cut will occur – and many of the most vulnerable could die.

Pennsylvania's intellectual and developmental disability service system is already suffering chronic underfunding, with approximately one-third of agencies losing money each year. Over the past 20 years, growth in the Pennsylvania budget for these services has lagged about 65% behind the general Pennsylvania budget. The result is high workforce turnover, excessive vacancy rates, and most importantly, a significant waiting list for services. The ACHA would tip the scales and make surviving in this environment impossible for many of those currently serving these individuals.