Access to Home Care Services
BACKGROUND
There are approximately 8,000 spinal
cord injuries each year in the United States.1 The average spinal cord injured
person is male (82%) between the ages of sixteen to thirty. 2 These persons are
expected to have a normal life span after injury. Currently there are 250,000 o
400,000 persons living with spinal cord injuries in the United States of
America.3
The Balanced Budget Act of 1997 allowed states to
control how funds were used within their state. The rational was that the state
was closer to its citizens and could, by controlling the funds, increase the
efficiency of services. The result has been substantial changes in the
availability of home care services.
Some states have capped the amount of money they
pay for support services to the amount of the cost of care in a Skilled Nursing
Facility (SNF). This has forced many quadriplegics, who would otherwise be
living in the community, to enter SNF’s. These same states have made exceptions
to this rule for children and ventilator supported persons because a SNF does
not have an adequate environment to support these persons. No exemption exists
for the spinal cord injured person.
While Congress has
addressed the specific rights of disabled Americans in the Americans with
Disabilities Act, there remains controversy about the definition of independence
and the timing of service eligibility. For example, services eligibility is
being measured after services are provided and not before. Increasingly, spinal
cord injured individuals, like quadriplegics who leave their homes, are denied
coverage by their providers and Medicare on the grounds they are not ‘confined
to the home’ (homebound). Without these services, without adaptive equipment in
their homes, these people would not be able to leave their homes. The
unfortunate part of this is it requires disabled persons with limited physical,
mental, and financial resources to challenge the State in order to assert their
rights.
POSITION
Home, community, family and friends are extremely
important to spinal cord injured persons in terms of their quality of life,
their psychological health and their future. Home care benefits represent far
more than just the services provided in the home. These services are of
extraordinary importance to individuals with spinal cord injury and are
essential in their struggle to remain independent and healthy.
AASCIN believes an individual who uses an
electronic wheel chair should be considered homebound even if he or she is able
to exit their home.
AASCIN believes that want individuals should not
have to limit their contribution to society in order to maintain their benefits.
AASCIN believes placing limits on the number of
hours an individual can leave the home and still satisfy homebound requirement
makes it more difficult for individuals struggling to remain independent and
productive to be cared for outside of an institutional setting.
AASCIN believes it is the right of the individual
to choose not only their provider but also the location in which their care is
provided.
AASCIN believes that just as there are exceptions
for the care of children and a ventilator-supported person to remain in their
homes, there should be an exception for the spinal cord injured individuals.
AASCIN believes that spinal cord injured persons
who need continued assistance in their homes to remain productive member of
society should receive that care.
AASCIN believes it is unconscionable to uproot a
quadriplegic, who is a contributing member of society, and force them into a SNF.
AASCIN believes that the federal government must
resume administrative control of home health care preventing each state from
administering care based on their economic condition.
AASCIN believes that every person has the right to
choose where and with whom he or she lives without denial of these rights in the
name of economics.
AASCIN believes that to take away the hope of an
individual for a productive future in society is wrong.
References:
-
National Spinal Cord Injury
Association; Factsheet #2, National Spinal Cord Injury Statistics Center.
Spinal Cord Injury: Facts and Figures at a Glance. Birmingham, AL:
University of Alabama at Birmingham, April 1999.
-
Ibid.
-
Ibid.
(Adopted 9/99) |
