See CP Links for a drill down menu to more state and county
specific information.
Pierce County and Private sites as well as specialty and educational as well as activities for the Disabled
I live in Pierce County so it has the most links of any. Some of these links may be able to put you in touch with the right people in your county.
Links to County and Private disability sites as well as Advocacy Groups, Schools, Specialty sites and Fire depts.
Cerebral Palsy can run the gambit from slight tremors/seizures or learning deficiencies to total dependence on others.
A friend, Amanda, is severely disabled with little control of her body. She does not speak though she can indicate what she wants to some extent and she has severe diabetes. She is totally dependant on her mother.
At 'near' the other end of the spectrum you will find
Amber, Our Daughter. Amber suffers left hemiplegia, Dystonia, painful spasms and
Rheumatoid arthritis. She also has NLD and suffers chronic depression.
To read more of Amber and our stories click on the links on the left navbar. Or go to the sitemap for more info of all the links. Many links are not on every page but are linked through relevant pages. The sitemap will have most pages of this site listed so you can find what you are looking for with ease. Other sites will either be on the left navbar or on the linked pages within pages.
For example CPLinks, Federal, State, County etc. on the left nav-bar is a "drill down" link. By clicking on the CPLink you get to the page which has the Federal and State links. Click on a State link and you get the
States Home page. Perhaps a County page if I have gotten that far.
Washington State is the only complete listing and Pierce County the only that has links other than the Health
Department and Schools which all the Counties in Washington State have. I will add more pages as I have time or if any send me information.
I am trying to provide all the relevant information I can in one place ( This Site) so you do not have to spend weeks or months looking for information as I have had to do. There are just so many hours in a day and as one person I am doing the best I can. It may take years to complete and any help you can provide would be appreciated.
I have made a commitment that I will continue to make as much progress as I can on this website in order to provide information to those in need.
The following is information of Amber and what you will find on this site. If you are not interested just look to the left nav-bar and click on the link that is of interest.
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As Amber had a stroke at birth and most of the right hemisphere of her brain was affected she not only has left hemiparisis but has developed Dystonia as well. I would be remiss if I did not include some information of NLD (non verbal learning disorder) which is a symptom of the damage to the right hemisphere of the brain. One does not need to have a traumatic event like Ambers stroke or any other brain injury to have NLD but it is most common in those who do.
There is an excellent website that will inform both parents and professional educators of NLD, how to diagnose it and what may be done to mitigate some of the effects.
NLD On The Web dot Org
www.nldontheweb.org/
If your child has NLD this site is perhaps the best place to go to find the information you need.
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Just a Thought
Not that I am vying for a donation. In time I will create a separate page for this information. But not all charities are the same. Some the salary of the CEO is almost as much as the contributions they receive and others spend an incredible amount on either employee compensation or fundraising in comparison to what monies they give or use to promote their cause. Before donating any monies to any charity find out what percentage of your donation is actually going to make it to those in need. A good place to start comparing Charities is here:
National Charity Reports Index of the BBB
If your charity is not listed ask to see their annual report before contributing. Make your donation go farther by donating directly to your local therapy unit or better yet see what is needed and purchase the equipment and give them that. Then there is no way your money can be diverted.
I do believe that national and local charities can be run with the acumen of a great financial business. Making great amounts of money that can be used for great needs but many charities do nothing more than pad the pockets of those who run them so do your due-diligence before contributing any money to any charity. I have found in my research that many spend all they receive on their own salaries and little if any goes to those in need.
OK, lecture over.
This site is all about you getting the information you need to advocate for your disabled child and / or a disabled adult. All of the information that applies to any State, like Washington or Wisconsin, will be applicable to ANY State as the ADA, IDEA 2004, IEP and 504 Plan are Federal mandates. And what has been found to be legal and optimal in one State would of necessity be binding to all States .
Be sure to take special notice of these very important pages:
(linked on the left nav-bar as well)
Parent & Educator Guide of 504
504 plan & IDEA Q&A
IEP overview
My take on the IEP, IDEA 2004 Public Law 94-142 & Public Law 101-476, and the 504 plan.
Your child's future is in your hands. Their success or failure is dependant on your strength and ability to perform. This site is all about helping you find answers to advocate for your child. With knowledge comes power and with power strength. And with strength the ability to overcome obstacles. Don't let your disabled child be swept under the carpet as someone unworthy of the basic rights that should be afforded everyone. Gain the knowledge to fight for your disabled child and insure they have every advantage they are entitled to.
Bookmark this site and return as often as you need to, to gain the knowledge you need to advocate for your mentally and / or physically disabled child or adult!
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This site was begun in December 2007. I have a long ways to go and would appreciate any help you could offer.
Links are my number 1 priority right now. I would
like to have a comprehensive listing of every State and County's informative
pages as relates to disabilities.
My number 2 is your stories. You do not need to get personal if you do not want, what is of more interest is how you were able to achieve results and where you were stonewalled. Especially helpful would be where you were able to find specific information and how you were able to use that information. We learn through our mistakes but we also learn from others. Help others avoid the pitfalls and find the answers through your stories.
Number 3 is to get this site noticed and to do that I need links to sites that have comparable content. If you have such a site or know of any who do please place a link to this site. I am more than happy to do a link exchange if you wish. Email this site to any and all in your address book, perhaps one you send an email to will be willing to place a link to this site on theirs.
Your stories will go far in helping others in avoiding your mistakes and in doing what you have done to achieve success. There is also a rants and raves section to just unload.
Thank You.
Within the pages of this site:
I have a lot on my plate and what with the problems our daughter is facing and the needs of our family I do not have the time to seek out and explore the available State and Local sites for everywhere USA, so I need your help in sending me this information so that I may post it for the benefit of all.
Though I have a page devoted to Donation/Gifts I do not really expect any. I provide this web as a service to everyone for free as I have had my fair share of bad experiences dealing with governmental, private and medical organizations or individuals and have come to the conclusion that if good information was available it would lessen the burden and frustration of many when searching for information, advocacy, or just a basic understanding of what is going on and what to expect.
In order to accomplish this I created CPFSN.org as a place to find this information but also a place where we can come together as parents and bitch about the system or rave about something or some individual that has in someway improved or touched our lives. Rant & Raves is where you can post a story that tells of your experience in as many as 5000 words (or there abouts)
This is about 8 pages in MS Word in font Times New Roman at font size 12.
I have removed the forums due
to lack of interest and spam but if enough people want them back I can reinstall
them.
This site is new to the web and as such does not have much exposure or traffic. If you would like to see this site grow to be one of great use and importance to yourself and others who have a child with disabilities then only you can make that happen. You need to place links if you have a web presence or tell others of this site and post a story under Rants and Raves. You need to send me those links so I can fill the informational sections to overflowing with relevant links and information to help everyone find the answers to their questions.
I truly want to provide as much help to parents of children with Cerebral Palsy or other disabilities and also those Adults with disabilities as I possibly can. I know how difficult I have found it coping with having a child with Cerebral Palsy and navigating the system as well as my personal battles won and lost. I have posted a page of Amber and another of us as her parents so you may learn from what we have done. I have also posted and try to keep updated a Blog of Amber and our struggles to provide her the care she deserves.
Also our son has ADHD and ODD so he will be mentioned as well.
I am still fighting for my children and will most likely be doing so till I die. Whatever I can do to make the process easier on others in my situation or having to deal with Cerebral Palsy or other disabilities is of great importance to me.
At the same time you must know that of paramount importance is the welfare of my personal family. I may not be able to keep this site as up to date as I would like because of family responsibilities and it is just a matter of where do my loyalties lay. Just as with you or any parent, my primary responsibility is to my family. This is why I need your help in finding those sites of merit and posting those stories that will help others in finding direction.
Yes we are low income and we could use what help we can get, but we expect nothing and this site will remain so long as I can afford to keep it up. My desire is to help, not to take. But as I stated before, as a parent my primary concern is my family. I would be remiss in my obligation to them if I didn't at least post a ppc
add or 2 that might have an effect on our standard of living. You are under no obligation to use any. I would however beseech you to send me those links and information and post to the rants and raves to help others.
The Rants and Raves should be on topic. Having to deal with a disability or a problem or rave of the system or your child's experience. I
will not imposed many filters so please keep it civil as I really do not want to censor anyone. I think a free and open exchange of ideas and the ability to vent even if this means cursing should be allowed. PLEASE bear in mind though that children have access to this web and as such a bit of self control would be appreciated. And parents you are responsible for your children and should be watching what they are doing on the web, whether it is reading the information on this site or others. I will however delete posts if I find them terribly offensive but really it boils down to NO Racism or hateful remarks, NO slanderous or direct attacks of another user, NO sexual connotations or proposals and NO use of the forums to promote your own agenda whether that be sales, other webs not related in information on Cerebral Palsy or disabilities, newsletters, biz-ops or anything I might or others might find a misuse of the privilege of using this site.
Again I have removed the forums
Our Stories which you may find helpful. Links on the left.
We will provide you with our experiences and how we were able to navigate the system. We will give you links and contacts to help you achieve some success, we hope, in getting services for your children.
In addition to Local pages we
will try to provide links to resources throughout the nation. If there are any
in your area you wish posted send them to me and I will try to get them listed
as soon as I can. If you have a web presence link to us. A reciprocal link
is fine.
We will tell you of Local, State and Federal resources we have used and the results we were able to get. The difficulty we had and some tips if you find you need to do the same. There will be also listed sites we have not used or just informational sites.
We will not only tell you of our experiences but also of others we have talked with and hopefully you will find within this information something you can use to your Childs benefit.
But most importantly We will tell you to NEVER give up. That life is a struggle with or without disabilities and you are your child's best advocate. And in most cases their ONLY advocate. I know it is hard sometimes. I've come close to burning out myself as have many others we know. The constant battles can leave you very cynical of the system and you have every right to be mad as hell. The constant worry as new medical conditions present or as we tire of facing the old can take a toll. But you don't have the luxury of giving up. Giving up is tantamount to failure and failure places your child in jeopardy.
Your child's future is in your hands. Their success or failure is dependant on your strength and ability to perform. This site is all about helping you find answers to advocate for your child and to find solace in a friend who knows what you are going through and might be able to help relieve some of the emotional frustrations as well as give relevant answers.
Sometimes it helps just to talk of what is eating away at us and sometimes it is refreshing to talk of other things to get our mind off the pressure cooker for awhile. Use the forums and chat to do both. I have removed the Forums but will put them back up if enough of you want them.
Sometimes we have a story to tell that eats at us and we just want to let it out. Good or bad we just feel better having been able to tell all. Anonymously if we must.
If you have an experience you would like to share please do so. We often learn through the experiences of others, the pitfalls and the successes, and how we can avoid the first and achieve the latter. Within your story may just be that golden nugget of information that will make it easier for another to realize their goals.
With Your permission Your experience will be posted to a page so others may read and perhaps find a nugget of information that will help them.
See the page Share Your Story for more information.
This site is large and growing larger all the time. I post as I get information. If you have not dumped your temporary internet files since your last visit you may be pulling pages off them. Hit the refresh button to view any new content.
I would also like to list military bases and the programs they might have. Just a link to the base public entry pages would be helpful.
Thank You
Robert and Tami
Hopefully, with time and the aide of interested people such as yourself, those with Cerebral Palsy and Other Disabilities will find on this site a fairly complete listing of available programs, Federal, State, Local and Private for everyone to use and benefit from. Most of what you will find on this site is my own experiences as well as my recommendations based on those experiences. Many pages are informational as to the IEP, IDEA and 504 plan but some are devoted to other disabled interests. Currently I have
nearly 100 pages of reliable information. I have links to hundreds of sites where you will hopefully find the information you are looking for if it is not here, though I think I have one of the more comprehensive sites for children with disabilities information on the web.
I have made it my mission to do what I can to provide good information to help parents of disabled children find the information they need. I have a disabled child and know how hard it can be to advocate for your child when information is not easily found. I am not a Lawyer vying for clients nor a person attempting to prey on your vulnerabilities. I am a parent of a child with Cerebral Palsy, left hemiplegia, Dystonia, spasms, non-verbal learning disorder NLD and JRA
juvenile rheumatoid arthritis along with other mental and physical handicaps,
who has decided I can make a difference by providing what information I can to
those in need. I also have a son with ADHD and ODD and more recently a drug
problem.
You will find a lot of information on this site including What is cerebral palsy, treatments of cerebral palsy, educational information of the IEP, IDEA 2004 and 504 plan links to sites with more information and our own stories, as well as a blog of our continuing battles fought, won and lost. You can add your story to this site as well.
If you have a site devoted to the disabled you
can place a link to us and have a reciprocal one placed on this site as well. All we ask is a conspicuous link on your home or landing page pointing to
your links page. We will do a simple reciprocal link to like minded sites and others to help with SEO.
Please join with me in attempting to make a difference through education and
links to available information.
Some information has been gleaned from public domain sites and information. I have tried to credit that information to those sites that have allowed me to use their information. I would like to say that most all governmental sites are public domain and some private sites will allow use of their material so long as credit is given to them for the information. I have tried to use as much of my own knowledge and experience as possible to fill the pages of this site but in order to provide you with as much information as I can I have used some found elsewhere. When I have done so I will have credited the information to a specific site. I can take no responsibility to the accuracy of that information.
Some information of cerebral palsy was gleaned from the National Institute of Neurological Disorders and Stroke 'NINDS'
Some Information of the IEP, IDEA 2004 and the 504 plan was gleaned from the U.S. Department of Education and the Office of Civil Rights. Some from local School districts.
Much information has been gleaned from my own searches for information and to list all would take a book. I credit those who have let me use their information.
Most of the information on this site is taken from my own years of research and visits with Doctors and things I have learned through years of advocating for my daughter. I cannot remember where each tidbit of information I know came from, though I'm sure I have the therapists, doctors, school officials and a myriad of other resources and people to thank for the knowledge I have.
If you have a web presence we would appreciate your placing a link to our site on yours. If you would care to do so here is our preferred link;
Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need for a child with disabilities.
And here is the code for this link. Just copy and paste it as you see it here to your html.
You may have to paste it to a simple text program to remove html added by
Frontpage. In any case you want the exact code below entered.
<a href="http://www.cpfsn.org"><img border="0" src="http://www.cpfsn.org/images/buttonsbglogosetc/cpfslogo.gif" width="159" height="151" alt="The Cerebral Palsy Family Support Network dedicated to helping support families with a Disabled Child and or disabilities. Helping the disabled find resources and providing a place for the disabled or their parents to congregate and have their questions answered."></a><BR><b><font face="Arial,Helvetica" color="#000000" size="4"><a href="http://www.cpfsn.org">Cerebral Palsy Family Support Network</a></font></b><BR><b><font face="Arial,Helvetica" color="#FF0000" size="2"> Dedicated to helping families find the support, resources and services they need for a child with disabilities.</font></b>
Thank You.
You may place a simple text link if you wish.
Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need for a child with disabilities.
<b><font face="Arial,Helvetica" color="#000000" size="4"><a href="http://www.cpfsn.org">Cerebral Palsy Family Support Network</a></font></b><BR><b><font face="Arial,Helvetica" color="#FF0000" size="2"> Dedicated to helping families find the support, resources and services they need for a child with disabilities.</font></b>
Make a secure donation/gift through Paypal by clicking on the link below:
Or you can make a donation manually by following one of the steps below.
Donations/Gifts are graciously accepted, Just log on to www.Paypal.com , Click "Send Money" tab and follow the instructions to send money from an existing Paypal account or by any major Credit Card. Use the email address below to make a Donations/Gifts on Paypal.
If you do not see an email address it is because you need to enable javascripts. The email is in javascript to foil the spambots.
You can also mail a Donation/Gift to
Tami Taormina
P.O. Box 4463
Spanaway, WA. 98387
Remember to follow the �GoldenRule� and (life, fate, karma, God) may just reward you with a bit more happy days than sad ones.
Thanks
Robert and Tami
If you have a site that deals with any disabilities then
consider doing a simple link exchange and having reciprocal link placed on the disability links page
If you do not have a site devoted to any disability you can still have a reciprocating link placed on the Non-CP other links page. A link exchange would not only show your support of this site but would increase your ranking with search through having another outside link (SEO).
Use the 'Contact Us' page and email Robert if you are interested in any link
exchange. Send the information of the site you want us to link to and the Title and information as well as the URL you would like entered. I cannot guarantee that all requests will be honored but I will take a personal look and make a fair and unbiased decision.
To speed up the process have a link to my site on yours and send me the URL. Our preferred links can be found on any of our links pages (left nav-bar)
2007 -2012