|
The following e-mail update was received from
Marcie Roth, Executive Director/CEO
National Spinal Cord Injury Association
From: "Marcie Roth" <mroth@spinalcord.org>
To: "Robert Klein, CEO"
<robert.klein@safeguardproperties.com>,
Good Morning-
Forgive the delay in updating you. As you know, I had some surgery
about 5 weeks ago and I’m just finally starting to catch
up.
I am extremely pleased to tell you that thanks to your gift, Mr.
& Mrs. Klein, and the work we have been doing to assist
hurricane survivors with disabilities, we were recognized for our
expertise by UMCOR, the United Methodist Committee on Relief. This
is the organization selected by FEMA to lead the national case
management initiative for all hurricane survivors that came from
the $66 million donated to the US by other countries after the
hurricane. UMCOR has given NSCIA a 16 month grant to provide case
management to hurricane survivors with mobility disabilities! This
will enable us to continue to provide high level support to
existing recipients of the Brian Joseph McClosky Fund, and others
who are just now being brought to our attention.
And, to add additional excitement to this story, we have hired
Jason Hurst, as our National Case Manager for this project.
You’ll recall that we first learned of Jason and his mom when
they were in a Salvation Army shelter in Dallas. They fled New
Orleans without Jason’s wheelchair or any other personal
belongings. Their home was destroyed by water that rose to within a
few inches of the roof.
We assisted Jason and his mom with housing in the Dallas area,
replacement medical equipment and supplies and a computer. Once the
were able to regain some of their independence and
self-sufficiency, Jason, who is a C4 quadriplegic, became an
obvious choice for employment with this project, due to his
background as a case manager and his very personal experience as a
hurricane survivor! We are also hoping to bring another Brian
Joseph McCloskey Fund recipient onto our staff and we have a few
others who will become active volunteers with the
project.
Your gift has had a tremendous impact, and it has helped us
maximize our ability to serve a population of people who would
remain in crisis, if not for our assistance. And, Mr. & Mrs.
McCloskey, Brian’s memory and his name are forever associated
with a project that has been recognized as one of the shining
lights in the aftermath of one of the worst natural disasters in
our history.
As you read the individual updates, please note SB’s story.
Without our help, S would likely have died, as a direct result of a
pressure sore she developed after sleeping in her wheelchair in a
shelter for 2 weeks. After many months in the hospital, and a life
threatening infection, we facilitated her transfer to a Spinal Cord
Injury Center in Birmingham, where she finally began to recover. As
she was about to be discharged, finally, with her health just
barely restored, we learned that Medicare had not approved the
purchase of her wheelchair and she was about to be discharged
WITHOUT A WHEELCHAIR!!! This would have resulted in her remaining
in bed indefinitely and once again unable to care for her basic
needs. We used our connections with the US Department of Health and
Human Services to expedite approval of the new wheelchair, and we
used Brian Joseph McCloskey funds to pay the wheelchair
manufacturer one months rent while they waited for Medicare to pay
the final bill. Sadly, the manufacturer was unwilling to give us a
deal of any kind, and charged $3000 for one months
wheelchair rental, for her $30,000 wheelchair… we were
frankly disgusted, but grateful for the ability to pay for the
rental so S could finally leave the hospital without further
jeopardizing her health and begin to pick up the pieces of her life
almost 10 months after the hurricane!
Here is a recipient specific status report on distributions from
Brian Joseph McCloskey Fund
July 31, 2006
Summary
Current cases are largely complete, with some outstanding issues
remaining. Action on some cases is pending decisions outside of the
control of NSCIA, such as rebuilding, etc.
NSCIA staff filled most equipment and supply needs through an
agreement with a leading national provider for durable medical
equipment and supplies that resulted in a significant discount, and
with appropriate customer and service support. Procurement of DME
and supplies through this source is nearly complete. Case
management with initial two rounds of Fund recipients continues on
several cases.
In cases where direct funding or reimbursement was more
appropriate, NSCIA staff was diligent in confirming and documenting
the need for, and appropriateness of, the items. Discounts were
negotiated at every opportunity.
Status by
Recipient
DS
D was spinal cord injured
from C-2 thru T-3 seven years ago in an accident. Her small gift
shop business was destroyed by Katrina and the duplex she shared
with her husband (one side) and in-laws (other side) was heavily
damaged. Her in-laws were her care-givers when her husband was away
at work prior to the hurricane. Her van and power wheel chair
suffered significant water damage. She is currently living in a
FEMA camper trailer with little room to move, an unsatisfactory
power chair and a $600 per month shortfall for her medical
supplies.
Status: OPEN
Her in-laws were approved for an SBA loan to repair the duplex for
habitability. That work is now proceeding. NSCIA has provided to
her a sliding type shower/transfer bench to make Activities of
Daily Living safer. Her existing wheelchair was repaired locally
and is now serviceable for the short term eliminating the need for
emergency replacement of the chair. Long term, the chair needs
replacement and her current private insurance will cover only a
fraction of that expense. If any funds remain after we have covered
expenses we have already committed to, this need will be
considered.
DC
D is 51 years old and paraplegic since age 17.
She and her daughter were flooded out of their house and sought
refuge in a nearby church for several days before being evacuated.
Her home suffered heavy damage requiring extensive
remodeling. She lost her adapted van, her daughter’s
car and all home furnishings.
Status: ON
HOLD PENDING REBUILDING DECISIONS
She has just now returned to her home but her insurance covered
only a fraction of her home’s damage. Staff has now received
her contractor’s bills as documentation of her repairs. State
grant assistance may be forthcoming in the future but that avenue
for relief is uncertain. Dianne may still have an overall
reimbursement need that could be addressed using McCloskey funding.
At present she is facing a $60,000 shortfall for remodeling of her
home.
D has now received her new BT/Shower wheelchair specifically
designed for her needs. (she is quite petite) Staff has
verified and reimbursed to D her out of pocket costs for the
adapted van damaged by Katrina. She had already purchased a
replacement van using insurance from her destroyed van and her
daughters lost car. D also was reimbursed for medical supplies she
had bought on an emergency basis. A replacement back up manual
wheelchair was ordered for D and will be delivered any day.
The final cost came in under the original estimate due to close
cooperation between NSCIA staff and our national provider. When the
chair is delivered, her case will be at a standstill pending a
response from MS and FEMA on rebuilding funding. She loves using
her first shower chair.
RN
R, 45, received a spinal
cord injury at the C5-6 level in 1982 when he was 22. Until
recently an active member of NSCIA’s Louisiana Chapter, R
lost his home, all his furniture and personal possessions when
Katrina struck. NSCIA has identified R’s immediate needs and
will be replacing several DME items and providing short term
disposable medical supplies through our new national provider on a
short term basis.
Status: ON HOLD PENDING BUILDING DECISIONS
DME’s including a Jay 2 cushion, Invacare A4 Ti manual chair,
tub bench and home medical supplies were all approved by NSCIA
staff and received by R. He is most appreciative of the assistance
that he has received.
PB
P has a C7 spinal cord injury
and is currently 46. We have worked with P to determine his
immediate needs and will be replacing DME items and furnishing
short term disposable medical supplies through our national
provider. Additionally, NSCIA is attempting to negotiate a reduced
rent agreement and provide rental support short term.
Status: ON HOLD-REQUESTED ITEMS FURNISHED EXCEPT ASSISTANCE WITH A
VEHICLE
DME’s provided include a replacement back-up wheelchair and
shower transfer bench lost in the storm. A discounted rate was
successfully negotiated for P’s short term rent and payment
to his landlady has been arranged. His vehicle sustained
significant water damage as verified by a local mechanic. Repairs
would cost markedly more than the value of the vehicle. He was
advised that vehicle purchase assistance has not been determined
but he indicated that there were available vehicles in the area
that would work for him in the $5,000 range. Currently he is
hitching rides to get around.
DT
NSCIA has worked with Access
Living in Chicago to provide D with up to 8 hours per day of
Personal Assistance. Additionally, we have made arrangement through
our national provider partner to have D assessed to determine the
best replacement manual wheel chair and bed for him.
Status: OPEN
Financial assistance to supplement D’s daily personal
assistance has been provided thru July 2006. He was evaluated at
RIC for a replacement manual wheelchair which is on order. He was
provided with a 30” reacher as well. Access Living provided
him with a single flat bed when he had none at all but this is a
stop gap solution as it significantly limits his ability to do his
own activities of daily living. A replacement hospital bed with
proper mattress is being researched.
SB
S is 64 years old and has been
paraplegic for 20 years. He and his wife lost the home they owned
during Katrina. NSCIA is supplementing P’s partial insurance
reimbursement from his destroyed home to assist him in the purchase
of a replacement home. The B’s feel confident that they will
have no tax consequences as a result of payment directly to them as
their income is low and they will still be showing a considerable
loss on their tax returns.
Status: COMPLETED
The B’s have identified a particular house and have moved in
to that house. They were furnished with a one time payment from
McCloskey funds and combined this with their partial insurance
reimbursement to fulfill their single request from NSCIA. Some
adaptations to this home will be needed and other funding sources
will likely provide this assistance. S’s case could be
reopened to assist with the adaptations if that becomes
necessary.
WC
W is 60 years old and suffered a T-11 injury at age 18.
He owned his own home outright and worked his entire life until the
hurricane took his home which was also his workplace. Along with
his home, he lost the vehicle and scooter that he used. Post
Katrina, he moved in with family but had a severely overcrowded
living situation.
Status: COMPLETE UPON DELIVERY OF SCOOTER
He has since moved into an accessible and affordable apartment.
NSCIA has provided short term rent support to satisfy Mr. C’s
apartment rent for the months of March, April and May 2006. This
support carried W over financially until his new SSDI payments
began. He no longer requires assistance with transportation. He is
still awaiting his scooter replacement thru the Vendor who
indicates that should occur very soon.
SB
S had been injured at the C 5-8
levels for 11 years at the time of Hurricane Katrina. She lived in
a home (fully paid for) with family but lost that home, all
furnishings and medical equipment as a result of Katrina.
Subsequently, she developed serious medical conditions due to
insufficient care and was placed in a nursing home to serve as
housing. FEMA has yet to provide an adequate housing alternative
for her.
Status: OPEN
Coordination by NSCIA staff has helped her move from the temporary
long term facility to one closer to the University of Alabama at
Birmingham from where she has now been released. She will need
additional follow up care through UAB in the future. Estimates are
being compiled for her future durable medical equipment needs.
Specifically, NSCIA staff intervened to allow her to leave UAB with
a custom power chair on a rental basis for one month pending
Medicaid’s determination on that chair.
Of special note, NSCIA’s close monitoring of the situation
and up-to-the-last-minute negotiation, avoided S’s release
from the long term care facility without a wheelchair.
Her used motor home, which will serve as a residence, was
refurbished by volunteers using materials purchased by McCloskey
funds. She will also be able to stay at her mother’s
residence for a period of time. An updated list of receipts for
accessible RV renovations has been received along with pending
co-pay amounts for her hospital and nursing home stays. Final
funding needs are incomplete pending further Medicaid
determinations.
ST
S is 85 years old and was
injured 15 years ago at the C-7 level (incomplete) in a motor
vehicle accident. He and his wife owned their home outright when
Katrina hit, extensively damaging that home and destroying his
adapted truck and most possessions.
Status: ON HOLD PENDING STATE REBUILDING ASSISTANCE
He and his wife have now returned to their home with completion of
the remodeling work continuing. NSCIA, thru the McCloskey Fund, has
thus far reimbursed him for work receipts that he has paid to date
for the project. At the time of the first payment he had run out of
funding to accomplish this remodeling all on his own.
NSCIA staff was able to locate an adapted van that will make his
transportation much easier than it had been before the flood, and
handled all negotiations and purchase issues. He has now received
this vehicle and resumed his independent travel. DME’s were
furnished to S including a set of crutches, wall-mount grab bars
and a padded shower bench. S has recently met with Mississippi
state officials and is encouraged that he will be eligible for some
state grant funding for his home remodeling costs. He expects to
receive that determination within a few weeks.
JH
J is 30 years old and was
injured 14 years ago at the C 5/6 level. Before the storm he owned
his own home in New Orleans and a van for transportation. He lost
his home including all contents, his van and his wheelchair when he
was evacuated.
Status: PENDING REBUILDING INFORMATION AND ASSISTANCE
J and his Mom are now in an apartment in Plano, Texas and putting
their lives back together. They are seeking to move to a more
appropriate home temporarily in Plano while their New Orleans home
continues to be prepared for restoration. Additional living support
will be needed very soon as their apartment is insufficient for
continued long term living. Jason is also hoping for eventual state
grant relief but expects that even that, should it come, will leave
a significant financial shortfall. Both are computer savvy and
Jason has just received his new Dell computer with printer,
provided by NSCIA McCloskey funds. They have received their
replacement adapted van through the McCloskey Fund, so
transportation will no longer be such an issue. NSCIA staff has
arranged for some basic medical supplies to be provided to J and he
has received his DME’s. Delivery of one of these is pending
the H’s finding more suitable housing.
On another note, J joined in an employment workshop presented to
staff of Blue Cross / Blue Shield in that company’s Dallas
office and moderated by NSCIA Chief Operation Officer, Eric Larson.
This not only was a step in helping Jason secure employment, but
key in supporting NSCIA’s outreach efforts.
JB
J is 37 years old and spinal
cord injured for 18 years at the C 5/6 level. His adapted van was
heavily damaged by wind driven rain during the hurricane. This was
his only means of transportation to work.
Status: COMPLETED
Initially, staff attempted to have his existing van repaired at two
separate repair shops. It was determined that repair was not
feasible and that the vehicle’s wiring system was so damaged
that it was a safety hazard. NSCIA worked to identify a used
replacement van of the appropriate type, style and necessary
adaptations, then negotiated a discounted price and finalized the
purchase of the van. Mr. B has now received the replacement van. He
is most appreciative for the assistance afforded him by NSCIA thru
the McCloskey fund.
TKM
Displaced from her apartment in
the Gulf region, she first needed to stay in a Quality Inn Motel
room when she evacuated to the Baltimore, MD neighborhood. Her
relative’s residence there was inaccessible. She is 26 years
old and was traumatically spinal cord injured 1 ½ years ago.
She lost nearly everything to the storm.
Status: COMPLETED
T is now in an accessible apartment in Baltimore. Six months rental
assistance has been provided for that apartment. Staff has also
arranged to assist her with funds necessary to replace home
furnishings lost in New Orleans. NSCIA staff is investigating her
Medicaid status as she indicates that her coverage has lapsed.
JMA
JM was also displaced from her
apartment in the Gulf region and lost all of her furnishings and
belongings. She is 44 years old and has a three year old incomplete
injury at the C 4-6 level.
Status: COMPLETED
She first moved to Minnesota to be near relatives and is now
transitioning to a home of her own in North Dakota with assistance
from the NSCIA McCloskey Fund. Funds for a down payment now been
provided to JM for the purchase of a property where she can live.
Additional funding was provided as payment for used furniture that
she had arranged to purchase at a great discount. Moving truck
costs for that furniture as well as belongings from another
location totaled were reimbursed, and Target store gift cards were
provided to her for replacement of belongings lost. Part of what
she then needed was winter clothing suitable for the North Dakota
climate. Further, NSCIA staff furnished funds for the purchase of a
used truck with hand controls.
DH
D was displaced from his
apartment home in the gulf and was eventually evacuated from the
Superdome by ambulance. His power chair was left behind and
currently he has none. He is 58 years old and has been quadriplegic
for 16 years.
Status: CASE COMPLETE UPON DELIVERY OF HOYER LIFT
D is now in an accessible apartment of his choice. NSCIA staff
assisted in arranging his transportation to that apartment. Costs
for that transport were eventually found to be covered by his
Medicaid insurance after a FEMA sponsored transport program refused
to transport him. He originally needed a special mattress which he
had purchased prior to our involvement and NSCIA has reimbursed him
for that purchase. Recently, D learned of Medicaid approval for and
received his replacement power chair. NSCIA staff is proceeding
with replacement of D’s lost Hoyer type lift. He has not as
yet received the lift from the vendor but remains most appreciative
for the assistance from NSCIA.
SD
S incurred a C-2 incomplete
injury in an accident in 1995. She is 34 years old and has three
children. She was displaced from her apartment by Katrina and now
resides in Charlotte, NC. She originally requested rent support and
replacement of two cervical collars that she lost.
Status: COMPLETED
S was furnished with an initial support from the McCloskey funds to
assist her with replacement of lost personal items for her and her
children. Further assistance is on hold pending demonstration of
need.
CT
C is 64 years old. He was
injured at the C-4/5 level at age 14. He is employed and has a
mortgage on his home which was flooded by Katrina. He is now living
with his cousin who made home adaptations for Cs’ benefit. A
new Neurogenic Hi-Lo bed was lost to Katrina floodwaters and he
hopes to replace his back up power wheelchair. His current power
wheelchair is 6.5 years old.
Status: COMPLETED
He had flood and home insurance but incurred a shortfall on the
homes rebuilding costs. Funding was furnished for certain materials
billed by his contractor to bridge that gap and he is now
rebuilding. C is very appreciative of the funding assistance
provided by the NSCIA and Mr. Klein so that he could proceed with
his rebuilding. He has replaced his bed by other means and his
wheelchair, while old has been repaired and is presently
serviceable.
Thanks again for your
support for NSCIA! We still have a long way to go with many of
these individuals, since they are still just learning about
rebuilding resources and how to meet their various needs, and
curious about the needs of the individuals we will be serving
through our new UMCOR Case Management responsibilities. We are
grateful to you for your assistance and your support!
Best Regards-
Marcie
Marcie Roth
Executive Director/CEO
National Spinal Cord Injury Association
(301) 717-7447 (Direct)
(800) 962-9629 (VM)
(301) 990-0445 (Fax)
mroth@spinalcord.org
Plan to
attend the 2006 Spinal Cord Injury Summit and SCI Hall of Fame,
October 29-November 1, 2006.
For more
information about the SCI Summit and for free membership in
NSCIA , please visit http://www.spinalcord.org
|
