Spring 2002 Volume 7: Number 1
Protection & Advocacy News
a
report from the nation’s disability rights network
P&As and Their Recent Roles in the Realm of
Assistive Technology
By Diane Smith, ATTAC/NAPAS Senior Disability Legal
Specialist
Jim Sheldon Jr., Esq., Executive Director, National
Assistive Technology Project,
Buffalo New York
Through
the Protection and Advocacy for Users of Assistive Technology (PAAT) program,
the P&As have been able to provide a wide variety of useful tools to people
with disabilities of all ages.
Assistive technology is vital because it allows people with disabilities
a greater degree of independence than has ever been available before.
However,
this freedom comes at a price, sometimes a relatively high price, and battles
over such issues as funding limits, warranties and expensive repairs can make
it very difficult for people with disabilities to obtain the devices and
services they need. PAAT programs
provide information, support and representation to people with disabilities who
use a wide range of assistive technology,
from simple devices such as shower chairs to power wheelchairs with
built in ventilators that cost tens of thousands of dollars.
Although
it may involve miles of red tape, the work that PAAT attorneys and advocates do
is never boring. It involves a number
of complex private and public funding programs (e.g., Medicaid, Medicare,
Tricare for military personnel, private insurance, etc.) with constantly
shifting requirements and an ever- changing technological world. In the blink of an eye, a ground breaking
decision that allowed for Medicaid coverage of an innovative piece of equipment
becomes completely obsolete as the device is surpassed by something faster,
cheaper, or more effective. PAAT staff must struggle to stay current on both
the law and the science in this fascinating field.
Here
are some examples of the types of work PAAT staff are involved with:
In
Florida, the P&A challenged a Medicaid rule in U.S. District court
that prevented recipients from obtaining a wheelchair costing more than
$586. This limit precluded anyone from
obtaining a power or custom wheelchair, meaning that many individuals were left
with ill-fitting, “one-size-fits-all” equipment that put them at risk of
serious health problems. The limit also
meant that an individual with a disability, who could not propel a manual
wheelchair,
could
not go anywhere without a second person to push. Fortunately, the court held that this rule violated the federal
Medicaid Act and regulations, thus allowing for coverage for more expensive
chairs.
In
Washington, the P&A (WPAS) successfully represented a seven-year-old
person with cystic fibrosis in his appeal for Medicaid funding for the
requested AT device, the ThAIRapy vest. This is a relatively new form of
technology that clears the respiratory passages of people with cystic fibrosis
and, in some cases, other similar diseases. The vest mechanically pounds the
chest in an efficient manner, a task that had previously been done manually by
caregivers, and is considered to be very effective.
The
Medical Assistance Administration (MAA) denied funding, asserting that the
boy’s mother, a single parent with two other young children and attending
college full-time, should provide hands-on chest physiotherapy (CPT) instead of
using the vest. The vest was
recommended by the child’s pulmonary physician as the best available
alternative. MAA failed to provide proper notice to the child of his appeal
rights when making the initial determination that funding would not be
provided. Significantly, MAA also attempted to construe the request for funding
as a request for a non-covered device, in spite of WPAS’ successful prior
appeal and review decision from the Board of Appeals in another vest funding
case that found that the vest is a covered device.
WPAS
prepared for a two-day hearing with testimony from numerous witnesses and
extensive exhibits. On the eve of the hearing, MAA agreed to a consultation
between the child’s treating doctor and the MAA doctor, who agreed to an
additional evaluation to rule out another device. Based on that evaluation, MAA
agreed to full funding for the vest.
This
case demonstrated Medicaid’s failure to provide adequate consideration in
making funding decisions and due process in the fair hearing process.
In
Colorado, there was a similar case involving funding for an ABI Therapy
Vest. The Colorado P&A, representing more than 25 individuals in one
hearing, got the policy of the Medicaid program changed to allow funding for
these devices.
In
addition to Colorado, many other state P&As have, through hearings or
negotiations, convinced their Medicaid programs to fund the new therapy vest as
a medically appropriate intervention to treat cystic fibrosis. The battle in
other states has shifted to whether the vest could be funded to treat other
conditions. The P&A in Idaho has already been successful in
obtaining this cutting edge extension of coverage through a recent court
decision.
In
Michigan, a seven-year-old girl determined to be legally blind was able
to receive appropriate assistive technology from her school with the help of
the P&A. She obtained a closed
circuit television (CCTV), which enlarges her books and worksheets. As a result, she is now able to show her
teacher and classmates how capable she is and is developing a leadership role
in the classroom.
The
Michigan P&A (MPAS) was also able to help two students obtain a simple
device at their school that allowed them to use the bathroom
independently. This was a tremendous
boost to their independence and self-esteem.
MPAS
assisted a young man with getting a communication device for use in school. The
school had requested the device through the state Medicaid program; however,
there were several delays in the prior authorization process at the state level.
MPAS was able to secure funding for the device before the start of
the
school year and as a result, the child’s language skills in the classroom are
currently improving without delay.
In
New York, staff from the PAAT and CAP programs advocated together, which
resulted in an agreement by
The
state Medicaid and vocational rehabilitation agencies that they would share
funding for AT that serves both medical and vocational purposes on a
case-by-case basis.
The
New York P&A staff also represented an individual with advanced Amyotrophic
Lateral Sclerosis (ALS) or Lou Gehrig’s disease. He had a long work history, but because of his deteriorating
condition, was forced to go on SSDI and receive Medicare. As his condition
worsened, he lost the ability to communicate with others. His wife even
reportedly found it virtually impossible to understand him.
It
was recommended that this person receive an augmentative and alternative
communication (AAC) device called a Dynavox to be able to communicate, however,
due to the National Coverage Decision (NCD) banning approval of AAC devices
through the Medicare appeals process, his request was denied. The New York
P&A was successful at the hearing before a Social Security Administration
administrative law judge because the NCD is not a binding one on the involved
client.
Similar
cases were addressed by the Idaho P&A, when they successfully
represented individuals in three Medicare hearings to obtain AAC devices. This
literally enabled these individuals, who were nonverbal, the capability to have
a voice.
Also
in New York, through one Medicaid fair hearing and on behalf of three
individuals, the state agency was prevailed upon by the New York P&A to
eliminate a previous bar on funding for power-operated scooters for persons who
are unable to get around without assistance but who do not require the more
expensive power wheelchairs.
The
Oregon P&A obtained “special needs funding” for a lift recliner
chair for an individual with significant, chronic back and shoulder pain
conditions, who needed to spend most of her time with her legs elevated and
required assistance to rise from a seated position.
In
Washington, WPAS investigated and helped negotiate final funding approval
for needed repair and modifications to a power wheelchair for a client with
cerebral palsy who lives independently.
The client is dually eligible (for both Medicare and Medicaid) and
endured a delay of over a year due to concerns by the wheelchair’s vendor that
the wheelchair would not, in the end, be paid by either program.
As
a direct result of the intervention by WPAS, this client and others like him
will be better able to more quickly resolve funding authorization problems
involving wheelchairs and other durable medical equipment.
WPAS
also represented a client with multiple medical disabilities and mild mental
retardation, who sought funding from either Medicare or Medicaid for a new
motorized scooter for three years. The scooter
broke down repeatedly and was ultimately determined by his doctor to be insufficient for
his needs. With the assistance of WPAS,
the client received a good evaluation at the University of Washington’s
rehabilitation department and ended up with the scooter repaired for use at
home, as well as a new, more sturdy power wheelchair for use in the community.
Again, the P&A helped the client to negotiate the difficult “dual
eligibility” scenario.
In another case involving state funding
and AACs, WPAS successfully represented a person with a closed head injury and
profound aphasia in his appeal for Medicaid funding for his requested
computer-based AAC system. Aphasia is the partial or total loss of a persons’s
ability to articulate ideas or comprehend spoken or written language.
The state refused to fund the system
because it was based on a computer. WPAS was able to obtain a strong Initial
Decision from the state Office of Hearings and as a result, other persons in
need of augmentative communication systems will have greater choice in the
systems that Medicaid will be required to fund.
WPAS also provided services to a
31-year-old woman with a genetic movement disorder that presents symptoms
similar to cerebral palsy with spastic quadri-paresis. The woman had an
extensive vocabulary, thus had a need for a sophisticated communication such as
a Pathfinder augmentative device.
Medicaid opposed funding for this AAC device, recommending a less
expensive and less effective device.
After investigation, negotiation, and a
lengthy administrative hearing, WPAS obtained a successful Initial Decision,
which awarded Medicaid funding for a Pathfinder AAC. Stay tuned, as the state
has filed an appeal of the Initial Decision and WPAS continues to represent the
client in that appeal.
As a direct result of the WPAS action
resulting in the Initial Decision awarding the Pathfinder device, there has
been an increase in the number of professionals who have an accurate understanding
about the role of Medicaid and Medicare funding for the purchasing and
servicing of durable medical equipment.
The
Kansas P&A dealt with a fresh and timely problem: web site
accessibility. The PAAT program initiated a review of all state agency web
sites for users with vision impairments. A number of sites had significant
problems in this regard, and as a result of the P&As advocacy, the agencies
made immediate modifications to the web sites targeted as most problematic.
The
Internet subcommittee of the state Information Technology Advisory Board then
quickly developed a web access subcommittee to review internet accessibility
issues. This group, of which the
P&A was an invited participant, generated state accessibility guidelines
for web access and development and is
conducting
a training program for state employees responsible for posting materials on web
sites. All of this was developed before
the regulations for Section
508
of the Rehabilitation Act (which address the accessibility of government web
sites) even went into effect.
Finally,
in Nevada and in a case related to an issue present in many of the
examples described in this article, the federal District Court ruled favorably
for the plaintiffs in a case which challenged state Medicaid practice when the
agency claimed that a particular item could not be funded.
The
practice was to orally deny the request without issuing a written decision that
spelled out the reason for the denial or the individual’s right to a fair hearing
to challenge the denial. This September 2001 decision declared the state
practice (i.e., decision without notice) a violation of federal Medicaid
requirements mandating notice and the opportunity for a hearing any time a
decision affecting the right to benefits is made.
As
can be seen from these real-life examples, PAAT staff members require a wide
variety of tools and a good bit of creativity to help clients successfully
negotiate the broad range of technology related problems that present
themselves to this diverse and dynamic community.
Protection & Advocacy News
Managing Editor: Nena E.
Tierney
A federal interagency project
of the
Administration on Development
Disabilities (ADD),
the Center for Mental Health
Services (CMHS), and
the Rehabilitation Services
Administration,(RSA).
National Association of
Protection & Advocacy Systems, Inc., (NAPAS)
900 Second Street, NE, Suite
211,
Washington, DC 20002
Voice (202) 408-9514 TTY (202)
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