Wednesday, February 22, 2017

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

C.A.R.E. Continence Aide Resource Exchange
https://continenceaideresourceexchange.blogspot.com

digndyspecialneeds@gmail.com
https://www.facebook.com/DIGNDY
906 630 1268