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Delivering
on the Promise: Health and Human Services Final Report
VOR
Concerns and Recommendations October 2002 [U.S. Department of Health and Human Services Final Report] Involving
Stakeholders VOR
applauds HHS's intention to include stakeholders in a variety of policy making
forums, including the Medicaid Community Services Reform Task Force and the
Disability Advisory Committee. VOR specifically requests representation in both
of these groups. General
Principles Consistent with the Olmstead Executive Order and the U.S. Supreme Court’s decision in Olmstead v. L.C., VOR asserts that all actions by the Administration, including HHS, must adhere to the following principles:
1. The population of people with
disabilities - including mental and physical disabilities - is incredibly
diverse. All policies must reflect these diverse and over time, changing, needs.
2. Designated agencies should
work with States to help them assess their compliance with the Olmstead decision
and the ADA in providing services to qualified individuals with disabilities in
community-based settings, as long as such services are appropriate to the needs
of those individuals. (See, Olmstead Executive Order, Sec. 2(a)).
3. `The Olmstead decision
embraces the maintenance of a full array of quality support options for people
with disabilities based on choices and needs. This includes own-home, community,
and institutional options, where necessary. 4.
Nothing in the Olmstead decision negates the legally-established role of
individuals and family members and guardians of people with mental retardation
as primary decisionmakers regarding services, supports and policies impacting
their loved one's care. Discharge
Planning The
Department of Health and Human Services indicated in its final report that
citizens stay in institutions due to ineffective discharge planning, and that
CMS will strengthen discharge planning and community-based services. VOR
agrees that placement and transfer decisions must be individually appropriate
and subject always to effective discharge planning. The Olmstead Executive Order
expressly recognizes that individuals with disabilities will have different
needs requiring different residential settings. HHS must be concerned first and
foremost about the quality of care available in community-based settings.
Effective discharge planning must consider the availability of equal or better
care in the surrounding community in order to avoid continued, widespread
tragedies such as those reported in more than half of all states (e.g., The
Washington Post investigative series by Katherine Boo). While
the Olmstead decision clearly endorsed community-based care for some people with
mental retardation, it also cautioned against forcing that option on those who
do not desire it and who require more intensive care settings. The Supreme Court
said "we emphasize that nothing in the ADA or its implementing regulations
condones termination of institutional settings for persons unable to handle or
benefit from community settings . . . Nor is there any federal requirement that
community-based treatment be imposed on patients who do not desire it." 119
S.Ct. 2176, 2187 (1999). Effective
discharge planning must take into account the legally established role of family
members, consistent with Heller v. Doe, 509 U.S. 312 (1993). In Heller, the
Supreme Court recognized that close relatives and guardians often have intimate
knowledge of their family members’ abilities and experiences which provides
valuable insights to ensure sound placement decisions. Likewise, nothing in the
Olmstead decision negates the legally-established role of guardians to provide
support in making these critical decisions. HHS
Final Delivering on the Promise Chapter III Solution I.A.4 c. provides the
following: "Permit states to target a single waiver to more than one major
target group (e.g. aged and developmentally disabled) or, alternatively, to use
functional criteria to define the eligible population to be served, provided
there is a single service package and the total cost-effectiveness calculation
is derived from the sum of discrete calculations in which costs are identified
separately for each relevant institutional category (e.g. NF, ICF-MR, or
hospitals)." By
allowing a single waiver, HHS is condoning the unacceptable situation of mixing
incompatible populations. VOR is concerned that ICF/MR eligible persons are
especially vulnerable and must be protected from individuals who are capable of
violent behavior. This is a safety issue. There have been more and more reports
across the country involving resident-on-resident abuse when the
“traditional” ICFs/MR resident is co-mingled with a court-ordered resident.
Furthermore, having widely-different populations in the same home puts a
tremendous strain on an already over-taxed workforce. Many of these staff
persons have not received adequate training for dealing with aggressive
behaviors. Over burdened staff and higher abuse rates in some facilities with
mixed populations have threatened resident safety and led to decertification by
CMS. Care
Giver Issues VOR
continues to strongly support all efforts by HHS to attract, motivate and retain
high quality direct care employees in all settings, including providing health
care benefits and Temporary Assistance for Needy Families (TANF) efforts. VOR
supports all efforts by HHS to provide respite relief to unpaid caregivers. As
many state and federal policies discourage families from out-of-home care for
their children with disabilities, VOR notes that the need for respite is growing
at an accelerated rate. VOR notes that HHS proposes a 10-year demonstration
project for some states to provide respite care to unpaid caregivers. VOR
questions the need for a 10 year study to demonstrate how to best provide
exhausted families with the respite support they need now. VOR is a family
organization. We are hard pressed to find any family who cares for their family
member at home who does not identify respite as an immediate, critical need.
Furthermore, most states have recognized that there exists a need and are
constantly working to piece together respite support. Providing families who
choose to care for their loved ones at home is always less expensive than any
out of home placement. Federal support to standardize the availability of
flexible respite care services is needed now, not 10 years from now. Many will
continue to suffer if the government waits for the results of a 10-year study of
a need that is self-evident. For
more information, please contact:
Tamie
Hopp
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
