The Promoting Excellence Huntington's Disease Peer Workgroup calls on policy-makers
Visit long-term care facilities and spend time interacting with residents
and staff in order to better understand unmet needs within long-term care
- Require insurance underwriters to create policies and administrative
guidelines that enable and encourage people with HD to work at whatever level
capable of performing without sacrificing needed benefits and services.
federal and state insurance benefits for people with HD when disease renders
them no longer employable.
- Enhance prescription drug and care benefits and
expand home-based services helping people with HD remain at home for as long
as comfortably possible.
- Fund formal demonstration projects that build upon
the recommendations in this report and on integrated, life prolonging and
palliative care models
- Enact legislation that states and national health care providers
and organizations adopt training and reference tools regarding recognition
signs and symptoms
[ Go Up ]
Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.