Personal support and a say in policy
The rule announced by the federal agency CMS in April 2024 included stronger oversight of individual service plans, reporting on waiting lists and a complaints system for certain community services. It also required states to establish advisory councils involving Medicaid recipients, families or caregivers. These provisions concerned how support is organised and monitored. [2]
Organisations turn the rules into advocacy work
The December programme listed Joseph Caldwell and Sydney Pickern from Brandeis alongside Eric Carlson and Hannah Diamond from Justice in Aging. The organisations urged participants and their advocates to get involved while states were preparing implementation. Their emphasis was on people receiving support having an active role in decisions affecting everyday life.
Independent-living organisations joined the debate
Earlier, a July 2024 webinar announced by the Arkansas disability council brought together the National Council on Independent Living and the National Association of Councils on Developmental Disabilities. It focused on the new advisory bodies. Both events treated participation as practical work for service users and advocates, alongside the federal requirements adopted that year. [3][1]