Hello all!
This is relevant to the forum, because I deal with my incontinence by helping others in the same boat. To that end, I am trying to start a non-profit 501(c)3. I call it C.A.R.E. , which is an acronym for Continence Aide Resource Exchange. Yes, I know the name used to be DIGNDY, or Diapers Given to the Needy, but my partner on the east coast, who is herself incontinent and an advocate for the disabled, had concerns about the name for cognitively impaired individuals. Also, some may take exception to the words diaper or needy. C.A.R.E. came to me as an inspiration at Mass. I have been operating unofficially, asking donations from friends and family and funding recipient requests to the best of my ability. Sometimes, I haven't been able to serve immediately. But, so far I have served at least 13 recipients, and raised 350 dollars, both in dollars given to my pay pal account or gofundme(which is now suspended, because i have other means of funding) and directly purchased items for recipients. I'm proud of what I have accomplished so far, but I can only ask people for so much before they say no without appealing to a wider donor base. I have realized more and more that I need to be established as a 501(c)3 with a board of directors. I don't know if you guys are aware of this, but it costs 850 dollars to file for a 501(c)3 with the IRS. Also, there are a lot of ways to incorrectly start a 501(c)3 and a few ways to do it right. I happen to know of an expert firm in Tennessee called the Foundation Group
https://www.501c3.org whose bread and butter is helping 501(c)3 organizations get off the ground. They have served 16,000 clients, and have a 100% approval rating with the IRS.
Their fee for service is $2,250 dollars, but it is a flat fee, and includes a LOT of services that require professional expertise. So in order to raise the necessary funds, I have started a T-shirt booster campaign, which you can find here:
https://www.booster.com/care-continence ... e-exchangeYou can buy a T-shirt for $25 dollars plus shipping (cost is slightly higher per shirt for 2XL and above sizes), and be recognized for your contribution, and spread the word about C.A.R.E., or you can just donate to the cause. The shirt does NOT in anyway define you yourself as incontinent. On the front it has "Agent of C.A.R.E" with a chalk outline of a heart, which contains a group of people of varying ages (which is PERFECT because incontinence affects all ages) and on the back it has "C.A.R.E. Continence Aide Resource Exchange An organization dedicated to improving the lives of those in need." I then have the placeholder blog site address on the shirt, so people can find out more if they want to. By the way, C.A.R.E. will serve not only incontinent individuals, but families in need of diapers in infant and toddler sizes. This is because I realized that while there is already diaper banks for babies out there, they are not statewide, or even nation wide. Also, those in rural areas will not have easy access to agencies, and may be in need of assistance just the same. Therefore, this will be an online operation, starting in MI, and hopefully expanding to all 50 states. In order to reach individuals who are in need but don't have access to the internet, I am considering adding stations connected to social service agencies in each state that would connect the individual to an agent of C.A.R.E. that will then process their request. Incontinence is still a taboo subject for many, but talking with someone who also has incontiennce may help them feel at ease. Thus, I think my model will be that those who make recipent contacts will either be incontinent themselves or are caregivers of those who are.
Finally, I need your help. I need to find individuals who are willing to be members of my board of directors. I have already realized that this will be an online board of directors, since I probably don't have the talent or the connections to reach all 50 states located in my local town. I live in a small town of 14,000 so most likely the board of directors will be online. In the same way that we would use video conferencing in a local agency's office to connect with recipients, we would also use video conferencing to hold online board meetings. We could also teleconference. I seek individuals who have expertise in logistics, real estate (we will probably need a warehouse to store donated inventory, because the cost of direct purchasing diapers for individuals will be higher than if we simply used inventory that is donated, and can take advantage of FedEx's chartiable shipping program), finance, accounting, law, marketing, fundrasing, and web design. If interested, please PM me. As I understand it, the board of directors must be volunteer, but the organazation itself can have paid employees. I most likely will need to have paid employees eventually in order to sustain this project. I essentially want to reshape the face of incontinence care for the poor and special needs in the United States. No more will people have to put up with crappy Medicaid products. Thanks to C.A.R.E, they will have access to Confidry, Abena, Molicare, A+ and the like. I already know of one individual whose son is severely incontinent, has mediciad, but the products he uses are so cheap he wets right through them. She is washing his sheets every day. People on Medicaid (which some people make too much to qualify for, even though it is still very expensive to raise a child/adult with special needs) are told that these are what you get and thats it. NO MORE! Thanks to C.A.R.E, they will get what they need to live the best lives possible. While we will encourage them to seek treatment and get dry, often times, there is no cure for those of us who have certain types of incontinence.
A friend of mine pointed out that I was marketing certian brands of diapers, and in a way I am. Nothing wrong with that. Those of us who are veterans know what quality is, and quality isn't. I was at first choosy about what brands I would accept, but i have since realized that there are recipents in dire circumstances who have no protection at all.. and ANY protection changed often enough would help in a pinch. So, we would accept donations from donors of less than quality brands with the caveat that these will be reserved for last ditch worst case scenario situations (recipeint is in emergent need, but we don't have any of the quality brands in stock).
I've already told you about C.A.R.E. but here is the mission statement along with recipient stories (given with explicit permission of the parents involved) : Mission statement:
To establish an online diaper bank/pantry/exchange program, and educating the general public about incontinence accomplishing the following:
To meet an unmet need for a diaper bank in the Upper peninsula of Michigan serving infant through xxl adult size diapers, starting in the UP and reaching beyond filling the need gap of diaper banks of all size diapers throughout the United States.
To raise awareness of the prevalence of incontinence and decrease stigma
o raise awareness of quality products that exist to help manage incontinence FAR better than depend, store brand, or what Medicaid can provide,
To provide the HIGHEST quality possible products to those in need, cloth and disposable, to anyone who needs them
It is estimated that 33 million Americans are incontinent. Unlike the typical stereotype, incontinence does NOT affect only the elderly. It affects all ages, and both genders. People my age (34) and younger deal with it every day. A sizable majority use depend and store brand to manage their incontinence, but in many cases, these products don't adequately protect individuals. Just like WIC and food stamps cant be used to pay for infant diapers, most insurances don't cover diapers, although some do. Medicaid does cover diapers in SOME states for incontinent individuals over a certain age with a doctor's prescription. But, depending on the state program, the quality of products can range to decent, to very poor because medicaid in many cases contracts with the lowest bidder in states to provide incontinence products. I deal with incontinence every day and I know first hand how terrible some medicaid products are. I ended up switching to cloth diapers because of it. Many people can't afford to do that, they can only use what medicaid provides. They either don't know or cant afford the high quality products that are out there. I am hoping to change all that. First, I want to educate the general public about the prevalence of incontinence, and then to educate incontinent individuals and their caregivers about quality products that exist to meet their needs. I have one recipient I served who only needed information about adequate products, They could afford to buy them themselves. Her son deals with complete bowel incontinence at 18 years old and needed quality pull ups in order to cope. His mom had a hard time finding something that would fit. I helped her. Finally, through the generosity of individual donors, donating financially or in-kind, I want to help those who need higher quality products to get them at absolutely no cost. I am establishing an online diaper bank/pantry/exchange program. I will distribute to individuals and agencies. This is an exchange program because a recipient may have some decent quality diapers that another recipient can use, but they are not adequate for the recipient due to high absorbency needs. I would take their diapers and in exchange, give them diapers that meet their individual absorbency needs. Thus, recipients become donors, and in turn donors become recipients. There will be eligibility requirements involved. They are: low income and incontinent (providing records to prove both) or disabled and incontinent (providing records). For short term emergent need..(that is, buying a bag or case) one only need self identify as low income and incontinent or a caregiver of the same, or self identify as disabled and incontinent or a caregiver of the same. Here is the story of some of my recipients, taken from my placeholder blog
https://continenceaideresourceexchange.blogspot.com: 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 developmental 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. He has received 1 bib that I sent him through an individual campaign for his needs, but unfortunately due to slowness of the USPS in South Africa, has yet to receive the diapers i sent him. But they ARE in South Africa, just not a his house yet
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.
So, in short, spread the word about the booster campaign, and let me know if you can help, or know people who can. I will also be doing a shoe drive. What is a shoe drive you ask? An organization called Funds2Orgs partners with organizations AND individuals to run shoe drives which collect new, used, or gently worn shoes which go to third world countries to help the economy and give shoes to those who don't have a single pair. In exchange, Funds2Orgs writes a check based on the weight of the shoes collected. They pay $0.90 a pound. 100 bags of 25 shoes each will net a fundraiser $1,000. So, combined with the t-shirt booster, this campaingn could very will give C.A.R.E. the funding it needs to get off the ground. you can find fund2Org's website here:
www.funds2orgs.comI will also be posting this in the general discussion forum, because well, I want this read as much as possible!
Peace out!
Rob
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