Offering one person 100GB of free online space.

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Permalink Reply by Mr.WHODONEIT on October 31, 2008 at 3:02pm

anybody?

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Permalink Reply by Michele Williams on October 31, 2008 at 7:43pm

Mr.WHODONEIT,

What a wonderful, generous offer! Let me thank you for showing everyone that generosity is not dead!

If you want a chance to help change many people's lives and get a deduction for it, please give that 100GB to help me set up a website for a new non-profit disability resource center. Parents of children with disabilities have nowhere to go to learn what it takes to be a good parent for their children, how to manage the medical, educational, psychological and social differences; how to teach a child to understand disability and how it affects their lives, learning, social development, and how to manage that disability proactively. Instead, parents of children with disabilities and their families live from one crisis to another, confused, lacking resources and understanding, frequently finding themselves driven into poverty by their children's needs. Individuals who acquire disability through illness, accident or aging are no different. There is no place to go to get information about how insurance should work and what to do if it doesn't, how to finance disability, making accessibility changes to the home, employment issues, psychological adjustments of the individual and the family, trust funds, government assistance, etc. No one ever finds it all...and that's why 70% of people with disabilities who want to work and can are unemployed and many of the others are underemployed. This Center is so desperately needed because services are so fragmented that even professionals don't know what is available. Even our professionals need training to know how to work with and for people with disabilities!

I'm starting a disability resource center in Miami, Florida to serve half of Florida, and I hope the work can spread to many other areas as well. There are federal grants that will fund such work, but it has to be operating for at least two years before they will consider funding us--in the meantime, I'm scrambling to pull things together. If I had a website I could send people to that would tell what I'm trying to do, people could see whether they want to join the effort even if I can't find them or don't know about them.

To provide a website with 100GB of resources, information, referrals, links, support blogs...fundraising to help pay for disability information sections in public and libraries and for scholarships for students with disabilities...I have dreamed of just having a website, but to have so much space! That would be more than MY dream come true. Information that makes life better, lets children get their education as it should be, permits families to understand each other and stay together, helps people stay independent and not go to welfare, gives dignity to people who are often treated as less-than-worthy-to-live, helps people remember that the body doesn't define the personality or the spirit....information is power. Making this information available on a website can make dreams come true nationwide because people who can't come to the Center in Miami can visit the website and get TONS of information not otherwise available for their needs--easing their despair, building their strength, making THEIR dreams come true.

Will you help me give that power to these families and people? Will you give me that space to help me help them?

Do you have questions? Gee, I wish I had a website to refer you to! If you want to discuss the presentation PowerPoint I'm using to find the members of the board of directors to get us started, please e-mail me at abilityoptions@gmail.com. That presentation is attached.

Thank you for being a generous person!

Michele Williams, M.S.
Education Consultant/Advocate

Attachments:

• South Florida Regional DRC 9-2008.ppt, 198 KB

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Permalink Reply by TheRetroMetro on October 31, 2008 at 10:59pm

Good Idea!

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Permalink Reply by Constantino on October 31, 2008 at 11:03pm

Very good idea

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Permalink Reply by WRRY, TheeBayk1d on November 1, 2008 at 12:38am

Great idea no way I want to even post against that... a very worthy cause.

Good Luck on your noble cause!

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Permalink Reply by TheRetroMetro on November 2, 2008 at 7:13am

The main thing I would be concerned with is ensuring that no private information was posted.

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Permalink Reply by Michele Williams on November 2, 2008 at 9:13pm

Thank you to everyone who has commented thus far. It is encouraging to see your response to this effort.

RetroMetro, for a website for a center such as this, there would be no private information. Here's what I want on it:

Services the Center offers
Links to everything under the sun that can help a person with disability who needs

a. Financial Information (help to pay for services, therapies, medications, doctors, hospitals, remodelling a home for wheelchair accessibility, and financial plans for caring for a dependent child after parents' death, insurance, special needs trusts, etc.)

b. Employment (who hires people with disabilities; how does one decide whether to disclose a disability if it isn't visible, how do you do that, to whom, when; how to claim accommodations and how to know what is reasonable; where to get training/education; how to do a power interview despite disability; discussing accommodations and community resources for employers, how to fit into the workplace, etc.)

c. Parenting Issues (how to be a case manager, a disability manager, a crisis manager; how to parent a child with this child's disabilities; education and education advocacy; how to guide social development of the child with disabilities, etc.)

d. Research Instruction (how to research to find what is state-of-the-art for the disability in question, how to contact researchers to find out more, how to become a subject of a study, things to consider before doing so)

e. Resources (which doctors, therapists, specialists, agencies, books, papers, research centers, medical cases, can help you?)

f. Disability information (information about any disability we can describe and links to organizations, associations, clinics, and specialists for the disability in question)

g. Social Security (who's eligible, when, links to Social Security webpage for referral to local offices; and the BIGGIE - how to realize you can't afford to go to work because you'll eligibility to Medicaid/Medicare benefits through Social Security disqualification if your employer's insurance won't be enough)

h. Annotated Book List

i. Assistive Technology Information (speech-to-text, text-to-speech, mobility aids, gadgets, software, keyboards, research)

j. Housing (ADA accessibility requirements, landlord/tenant rights, roles, obligations, where to find supported housing, assisted living facilities, and the like, and how to fund living there)

k. Community Networking (how to find the resources in your community and how to create what you need)

Of course each of these items are where people make entire careers, so the information a website contains cannot ever be complete! We can only hope that people who are guided to some information will be able to use those same resources to find more.

Additionally, we hope to conduct a lot of trainings for parents, individuals with disabilities, and professionals who work with individuals with disabilities. If we could web-conference or webinar these trainings, handouts, outlines and informative articles could be made available through a website archive link. Is that cool or what?

And how about an online library specifically for disability-everything?

You can see why 100GB would be so wonderful. People with disabilities and parents dealing with their children’s disabilities without this information often have little hope and few options. Even so, options for some people with disabilities are limited because of the nature of their disabilities. But I hope we can eliminate the unawareness of the options that do exist.

I don't think there is a need for private information on this website. Disability organizations have their websites, support groups, etc. Once people are pointed in that direction, that is where they can divulge their personal stuff. I concede that there should be a place where the lesser-known disabilities should have a blog-sort of meeting ground to help them overcome the isolating effects of disability. Perhaps some years down the road the Center could establish it, but I can't visualize it as part of that website.

Thanks for bringing up the thought! Other ideas are welcome...

Michele Williams (frequentsmiler)

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Permalink Reply by TheRetroMetro on November 3, 2008 at 3:33pm

And... eventually a forum for folks to share experiences... such as those nontraditional students to help support each other...via the forum..with far less stress of traveling to face to face groups. . .

Or would you be letting the other professional orgs handle that?

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Permalink Reply by Michele Williams on November 4, 2008 at 8:04pm

RetroMetro,

There are many areas of this country where the lack of resources is a huge hindrance to getting diagnoses, treatment, therapies, etc. Think of rural areas of the western states, for instance, where it is likely that there is one doctor - a general doctor - who serves 4 or 5 counties, where there is no mental health facility for hundreds of miles, where no hospital has specialties beyond arthritis and obstetrics or the most common ailments; the more comprehensive the support given on a website, the more people in these areas can benefit. There is absolutely a place for Internet disability forums and support. We already have some attorneys and mental health counselors practicing over the Internet, and support can function that way also. But privacy is THE caveat, and people must not use such resources without being very sure of their other options, what privacy there is/is not, and make sure they stay within the bounds of the privacy they wish to maintain for themselves. Operators/owners of websites cannot know for sure what use others may make of the information disclosed there, and users of websites must act accordingly.

And the nice part: forums in partnership with national organizations to link our Center to their work/services through the Internet would mean the information people get will be accurate--the other most important thing we have to assure. Not that we would have to run the forums...sometimes partnering enables both entities to do more than either could do separately. I think that's probably how we'd approach it first.

I have no tolerance for rumors and half-truths being spread as facts because so many people can be so deeply and permanently hurt by it in this field. So if someone comes out with some amazing new discovery and wants it blasted around, you can be sure the field work verification will be done first. I'd like to see professionals in the field be the ones who help us run these forums, not because of any prestige or their ability to drum up business, but because their professionalism rests upon credibility and experience. Trust is absolutely critical in efforts such as these. It has to be earned and deserved, and absolute accuracy and honesty is the only way to get that. The individual experience in these forums will determine the quality, and the more professionally it is run, the more everyone can benefit. Yes, as in non-traditional students whose learning experience is not like the average (what is that, anyway?) and whose needs sometimes run contrary to "the way things are done." (I have plenty of experience with that!) For the unique aspects of timing (don't need an appointment), location (wherever you are), and privacy (your choice), forums and blogs are an essential part of what we'll do.

Eventually I hope we can have many forums, some for the roles we play in life as parents, partners, spouses, friends, employees, and some based on the different disabilities so people can share their knowledge and experiences.

In the Center, meanwhile, I hope to form a tracking system like nothing else I've heard of. Parents need information along a timeline. As their children grow, the disability changes, the needs change, education needs come in, life stages enter and change, and along the way, parents need different sets of information to deal with all those issues successfully. Putting them and their child on a "track" to monitor and assure they have the information they need just before they need it will help them live proactively. Anticipating the needs of the child means crisis is averted. The mental health of all concerned will improve just because of that, but the outcome for the child will be far better, too--with greater likelihood of reaching personal potential and a happy adulthood.

You see what I mean about dreams...parents have dreams for their children and children have their own dreams. Everyone whose life is changed by disability must learn how to dream the same dream differently or develop another dream just as strong and possible. Knowledge is the key to all of it.

For those who can't trek to the Center, the Internet offers the best alternative. For those who can physically come to the Center, the Internet offers expanded resources far beyond what could ever be offered under one roof (or several).

So, do you still like the idea?

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Permalink Reply by TheRetroMetro on November 5, 2008 at 8:49am

Yes, of course. As a professor, I find that the forums help those folks find what works for them...helps them find answers on their own... empowers them in the learning process.

Options are always welcome, whether or not we like that option. Some of us prefer a holistic style of medicine, others are more specifically... technical. Inside the box, with "no, we'll go by the book" - mentalities. We all ultimately decide what works for us. A tracking system will be incredibly helpful on this front. Folks will better be able to see what's worked and what hasn't worked so well...regardless of philosophy. It will empower your clients!

Again, though, we still bear the burden (for lack of a better word at this time) of confidentiality. I used to keep a log on my daughter's asthma. If I had had something like this in place, it would have definitely reduced my confusion and allowed me to see a bigger picture. Even if it was in a printout form. I would have felt more empowered during a time when neither of us had any control over her condition... when we were figuring out what wasn't working, before we could figure out what did work. All the while, ensuring my own confidentiality because a printout wouldn't be stored online.

I think that WHEN you get the free space... that you will open up those options...to better educate the clientele... to empower them...as well as the professionals who will be involved...while ensuring the necessary confidentiality.

I also think you will need a LOT MORE space! I give it a year at most before you have to move; that you will need to purchase a website. (It's not as expensive as one would think). I think that the privacy issue will present itself more fully as a need to be included in the online arena... that you will be able to offer access online to such as said tracking system. By this time, I would expect that you have more sponsors... and that this could possibly become a service to which one could subscribe (via small fee or health care organization sponsorship). Perhaps, as you work in conjunction with other health care professionals, they themselves could subscribe to a service specifically for their patients, which could offer an even larger umbrella, so to speak, of accountability. I honestly don't know how that would work, but then that's the reason we need lawyers! (yay!) I think that these things will work themselves out as the site develops.

I'm so excited for you that I'm just going on and on and on with alternatives pouring from my head to my fingers. Start small, but think big!

So... how long must we wait before this honor is bestowed, MRWHODUNNIT?

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Permalink Reply by Michele Williams on November 5, 2008 at 11:38am

Professor RetroMetro,

I am delighted with your ideas! Subscribing health care professionals to a service within the website/center would help the funding picture as well as people and the professionals. A really great service might also attract insurance companies as a service for their customers. That's something to think about.

Your point about lasting only a year with 100 GB surprised me, mainly because I perceive 100 GB having the size of the universe compared to what I'm used to working with (8 GB feels big to me).

I was at Florida International University for 3 years in the Disability Resource Center. Where are you "professoring?"

Your ideas are wonderful. Please keep in touch. I'd love to have your continuing ideas and feedback.

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Permalink Reply by TheRetroMetro on November 5, 2008 at 12:29pm

Professor Michelle,
Pitt Comm College (I'm adjunct and course development) Everything I do is online... EVERYTHING! I'm also blogging... and I got my own website, but I'm waiting on copyright (which is a confusing thing for me to navigate right now) so I can post some patterns for sale. I hope to have that worked out by this, or next, week.

I have a BS in Construction Mgmt - which was face to face ... and MS in Technology Systems (Digital Communications) - which was wholly online. I've subbed for other profs F2F, but I much prefer online. I don't think I'll ever look back... or I say that, but I'll probably continue to help out F2F. *Laugh*

We should definitely keep in touch. I was a former LPN for years. Yeah, I know. Big jump to Const. Mgmt!

As far as the 100G goes...it's a TON of space. One of my concerns would be that this could be a scam... therefore it would be far less than a year before you decided to buy your own. We haven't heard anything from Mr. Dunnit so... I'm starting to think maybe it's not a serious offer. Additionally, it may be best to actually pay for the service through a company (I use Network Solutions and so far, I'm very happy) for the customer service to answer questions. I almost went with GoDaddy, but decided to pay the extra for the extra service. I work on the site myself, but they've been helpful in answering technical questions.

If you plan to run videos, music, etc... and offer services such as well as offer it as a service to professionals and, alternatively, insurance prospects, you may find that you require more resources. And I would wonder how often they do backups. I'd hate to get my info up only to have to do it all over again.

If anyone else has any advice on this, I'm sure they'll volunteer it sooner or later. I tend to be retentive about things... *insert grimace here:

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