This is the story of an idea. An idea that became a vision,
a vision that, has become a small endeavor An endeavor that will hopefully , will become a fully realized 501(c)3 with
partnering agencies. This is the story of C.A.R.E. or Continence Aide Resource
Exchange. To find about morea about this vision please read below.
One Inspirational Sunday
I am about to
tell of a very personal issue, considered to be a taboo and unspeakable in our
society. I am speaking about the loss of bladder and bowel control. This is the
story of incontinence. This is my story. I deal with moderate to heavy urinary
incontinence on a roughly daily basis, and bowel incontinence on a more occasional
basis. I feel now is the time to come public with this to end the stigma and
raise awareness. The epiphany that I had was this: out of the millions of
Americans who deal with incontinence, which includes all ages, those with
diagnosed disabilities and those without, don't know about quality products
that may meet their needs more adequately than store bought products. Or they do know about theme and in the case
of those who suffer severe incontinence, need them to live the fullest life
possible, but can't afford them. This includes Medicaid recipients, because
with apologies to Medicaid employees and the companies they contract with, some
state Medicaid programs, definitely not all (and they will remain nameless)
offer less then quality products. I know this from experience. The Medicaid
contracted company from my state (again, nameless) at first had decent products
but when a certain nameless company changed its product into useless junk that
was absorbent enough.. but had TERRIBLE fit and comfort, it left me scrambling
to find to find alternatives, several of which didn't even survive the initial
application. Eventually I switched to cloth and only use disposables (Confidry
being the preferred brand but not the only brand I use) when traveling. But, I
digress. Prior to that fateful Sunday I had been reaching out to special needs
families who posted about struggling to find diapers for their kids that fit. I
helped several identify products that would work, but was told that they cant
afford them. This really bothered me. Thus, the idea for CARE was born. I posted about the
idea on my Facebook incontinence groups, and only got one naysayer,
surprisingly from a fellow incontinence sufferer and an incontinence advocate,
who thought it was a good idea in practice, but would prove to be cost
prohibitive. Undaunted, I decided to go forward, The result? in just over two weeks, i
have raised over 110 dollars from very generous donors and served 8 recipeints,
6 in the United states, and 2 international. Here are some of their stories.
(Note: stories of recipients are only given upon EXPLICIT verbal-
and ,in some cases, written via text- consent from parents of recipients and
recipients over 18 involved. Rest assured if you wish to be a recipient OR
donor your privacy will be respected. Donors who wish to remain anonymous will
remain so, particularly if they are material donors, ie donors of diapers,
wipes, pullups, etc.)
Our first recipient's name is Michael. He is developmentally delayed as an adult, and
has to wear diapers. His foster parents , some of the nicest people ive ever
talked to on the phone, had his diapers covered under both Medicare and
Medicaid. Then his grandfather died, and that somehow totally messed up his
insurance. His mom reached out to me, and CARE answered the call. Thanks to
generous donors, Michael and his family received 2 Abriform X-Plus bags. Now
they have enough to get them through reestablishing diaper coverage through
insurance. I am told that Michael loves being in the snow.
Becca is severely autistic, nonverbal, and
currently has to wear diapers. Her parents were scrambling to find a solution
when she outgrew Pampers size 7. I helped her mom find diapers that would suit
her, and later on Becca became our fourth recipient. Through a generous donor,
her mom was able to receive one bag of Northshore Care Air Supreme. Her mom
tells me she loves Yo Gabba Gabba and The Gigglebelles. She really loves being
outside and jumping on the trampoline.
Normen is our first international
recipient. He and his family live in
Castleview South Africa. HIs mom, Ardi reached out to me via a mutual Facebook
friend. He is a severely disabled 11 year old with cognitive and develomental
delays and undetermined rare disorder. Despite his challenges, he is a sweet and happy boy,
who loves his ball and baby blocks, and playing with tins, delighting in the
sound it makes against his finger tips.
He and his family live in acute poverty, having to sell off their
possessions to buy food. Before he was served by CARE, Normen was wearing
pampers that didn't fit, and had a wheelchair that he was too big for. He did
not have access to meaningful therapy or orthotics, or a stander, or even a
safe bed. Now, thanks to CARE, in partnership with the local South African
charities, thanks to generous and gracious donors, Normen
is receiving everything he needs and more. I have talked to the family on a
daily basis and we have become very close. Seeing Normen's smile makes all the
hard work that I have done to serve this family more than worth it.
Another recipient is Taylor. His mom is also a generous donor in addition
to being a recipient. Taylor enjoys playing with his dog, and watching
wrestling on TV. He has trisomy 8 mosaic, and occasionally has nighttime
accidents. When asked if she wanted to be a recipient, she sad yes, in order to
try a more comfortable product for her son Taylor. She is pleased with the
result.
Kendrick is 18 years old and a junior in high
school. He has multiple diagnoses including Fetal Alcohol effects, Fetal Alcohol
effects, Cerebral Palsy, Autism, ADHD, MMR, Anxiety disorder and depression. His
mom tells me that his favorite person is Barney with Mickey Mouse as a close
second. As a result of his disabilities, Kedrick suffers from complete bowel
incontinence, and was unable to find a quality product that fit. She saw the
posting about CARE and contacted us. Within a day, I assessed her son's needs
and contacted companies for samples of quality products that will actually fit
him.
These are just a few of the 8 recipients CARE has served so
far. Their stories speak for themselves.
These people have had improvements in their lives thanks to
CARE and its donors. How can we serve you and your loved ones? Would you like
to be a recipient or a donor? If so, or to find out more information and help
spread the word, here is the eligibility, donor, and contact information of the
organization:
No
insurance information is needed, and we accept all with need regardless of
Medicaid status. For short term emergent need, one simply needs to self
identify as low income and incontinent, or having special needs and
incontinence, or a caregiver of said indivdidual, regardless of income in terms
of disability. Please be able to provide name, address, and telephone number,
including zip email if applicable, name and age of recipient, available size
information (weight, waist size, pant size), prefered style of product
(pull-ups or tabbed diapers), brand and size of currently used product,
and approximate number used/needed per day. The name of the organization is
actually CARE, but that page was created before i finalized the name change,
same with the gmail account. We gladly accept donations, either financial or
material(ie diapers/pullups WITH quality stipulations, see website or
email me for more info), and offer two options for donation: via Paypal at
digndyspecialneeds@blogspot.com or contact the email to be matched with a
recipient and be provided their contact information and requested product to
make a direct purchase donation. Pursuant to obtaining 501(c)3 status, donations are not currently tax deductible, but will be retroactively when CARE obtains 501(c)3 status. Recipient and donor personal information is kept in the strictest
confidence and only shared with companies to better serve you. Please contact
us, we eagerly look forward to hearing from
you!
Sincerely,
Robert Sullivan
Sincerely,
Robert Sullivan
C.A.R.E. Continence Aide Resource Exchange
https://continenceaideresourceexchange.blogspot.com
