Dear NCSA community,
Congresswoman Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH) have released a discussion draft of the HCBS Access Act for stakeholder feedback. The proposal seeks to mandate HCBS in Medicaid to provide critical services, creating national, minimum requirements for home and community-based services, and make it possible to enhance those services and the long-term care workforce. See here for discussion draft text and here for a memo seeking stakeholder input.
We strongly endorse the ending of waitlists for Medicaid disability services (even in the massive price tag may render the bill politically infeasible). However NCSA has expressed strong reservations concerning the proposal’s systematic discrimination against those with severe autism/IDD. Please read our letter here.
We strongly encourage you to submit your own comments before April 26 to HCBSComments@aging.senate.gov. Some points you may wish to consider are below. But please tell your own story and your own concerns — your voice matters and must be heard!
—NCSA Board of Directors
§ Community inclusion is a worthy goal, but not the only goal. Other important objectives are self-determination, choice, quality of life, and access to appropriate amenities, safety measures, and supervision.
§ “Community services” in reality often means no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover, no therapeutic or nutritional supervision, and high reliance on 911 calls to address crises, often resulting in violence, trauma, incarceration and psychiatric hospitalization
§ Dr. Lee Wachtel, Kennedy Krieger Institute: “Some autistic adults have severe behaviors that cannot be managed in community settings.”
§ Dr. David Mandell, University of Pennsylvania: “Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”
§ The proposal relies on vague, euphemistic terms that lack clear definition, i.e., what is meant by “congregate,” “institutional,” “community”? The bill sets the stage for endless battles over terminology
§ The HCBSAA “Advisory Committee” would place veto power in the hands of a few advocates
o The families of those whose cognitive impairments preclude self-advocacy – and who, importantly, consume the bulk of Medicaid dollars – must be represented
§ The HCBSAA explicitly excludes the intensive and disability-specific supports needed by many with severe autism
o Only “supported employment and integrated day services” are included
o Transportation limited “to facilitate community integration”
o De facto de-funding of ICFs
o Ultimately violates the entire concept of “person-centered planning,” the undisputed cornerstone of disability service provision
§ The HCBSAA overlooks the problem of housing access
o Residential providers for people with I/DD “cherry pick” mildly affected clients
o Lack of access to housing subsidies like Section 8
o Risk of eviction to those with dangerous and disruptive behaviors
o Settings Rule has had a chilling effect on new projects targeting the severely autistic