The Promoting Excellence Huntington's Disease Peer Workgroup calls
on CMS to:
- Change the current six-month life expectancy rule under the Medicare
Hospice Benefit so that access to hospice and palliative care by people with
HD is unimpeded. The six-month life expectancy rule is explained in Appendix
A, Addendum C.
- Offer higher reimbursement rates for Medicaid-funded HD nursing
homes to provide patients with better access to quality nursing home care
of comprehensive palliative care.
- Expand home-based care services coverage
through Medicaid to enable people to stay at home or to provide alternatives
to long-term care placement.
- Expand Medicaid coverage, where necessary, to
provide for psychiatric, psychological and behavioral services needed by
people with HD in the early and
of the disease.
- Expand Medicaid coverage with a prescription drug benefit
to symptomatic adults in the early stages of HD on the basis of a confirmed
diagnosis of chronic,
progressively degenerative disease rather than on the basis of a financial
means test or current level of functional impairment.
- Develop tools for disease
management and case management explicitly tailored to HD in order to provide
continuity of care and coordination of services.
- Fund respite services and
other family-oriented services to family caregivers of people with HD, recognizing
that bereavement services are necessary as
families grieve the chronic degenerative illness of a loved one well before the
- Provide coverage for long-term and rehabilitative services with the
goal of sustaining functional capacity and independent living to the extent
- Provide psychosocial and behavioral services in the home setting
in addition to traditional medical and nursing services, and adapt the
approach taken in hospice and palliative care near the end of life for
during earlier stages of HD when death is not imminent.
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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.