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
end-stage
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
and other
programs
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
middle stages
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
person's
death.
- Provide coverage for long-term and rehabilitative services with the
goal of sustaining functional capacity and independent living to the extent
possible.
- Provide psychosocial and behavioral services in the home setting
in addition to traditional medical and nursing services, and adapt the
team-based, interdisciplinary
approach taken in hospice and palliative care near the end of life for
use
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.
