3/21/10 I am coming on Aidpage for a short time to tell my recent story . I will try to answer the e-mails that have backed up as soon as I can . My recovery from my last surgery has been slow and full of complications.I am recently working on fight for Medicaid again. I owe about $40,000.00 plus for my operations and I pay over $11,000.00 a year for meds. The S.S. administration has dropped all my insurance .Even though I can prove how much that I would have to pay for meds. and doctors and tests by signed copies from my pharmacists and doctors (if I would pay the amount that they are now paying until the end of March ) , they claim that thier insurance paid for the costs and I have to prove that I cannot pay on my own before they re-instate the insurance.WHAT TYPE OF IDIOTS WORK FOR THE SOCIAL SECURITY?Now my option is to pay all my bills in cash so that I can prove that I am not able to pay my bills !?!?!So, to get help to pay my insurance , I have to go back to being destitute in order to get help again.What now ?soulight
CAREER EVENT FOR THOSE WITH DISABILITIES ! ONLINE !
This event will be on September 28 . For more information and to register go to the following link :http://www.missionusnrc.com/disability/
Important information about laws , regulations and disability :
The official disability site from the government has been changed to be more user friendly. It has more help than ever to find information about disabilities. Check it out for yourself !
New information about home accessibility/universal design and how to make plans/get assistance :
PRESCRIPTION FOR CHANGE
" Health care coverage makes you anxious, frustrated, exhausted. We know, because we traveled the nation this summer listening to your experiences trying to get decent, affordable health care.
Your stories illustrate the need for major change in our health care system. Americans shouldn't sacrifice freedoms—giving up dreams of a better education or another child, or staying in jobs and relationships we dislike—just because we don't have health insurance or fear losing it.
PrescriptionforChange.org, sponsored by Consumer Reports Health, is dedicated to getting each of us the affordable, quality health care and coverage. We're known for our unbiased, independent analysis of consumer products and services, and we've fought for decades to get you the best value and the best quality. Health care should be no different.
We're starting this campaign by taking your real-life health care stories to our leaders—the next President, Congress, state lawmakers and regulators. They'll hear what you're dealing with every day—maddening insurance claims, spiraling premiums and co-pays, endless waits for care.
And we'll push for common-sense reforms that put your needs first, not those of the deep-pocked lobbyists for health and insurance companies. "
Will there be REAL CHANGES this year ? We all hope and pray that there are. Here are some people who also are for change in our health system. If you are not part of the solution , you are part of the problem.
If you are looking for resources related to children with disabilities , this is a great start . It is a huge listing of links for parents of disabled children and teens . Here is a quote from the site :
Tour family fun and recreation, family health and wellness, family life and relationships, and special needs support for parents and children with disabilities
* The 5 years include a total waste of time with my 'friend' , a tax lawyer who thought he could help . What a mess . He even told me at the end that he really didn't know what he was doing . What a total nightmare that was. He just ended up being a jerk with a huge ego problem .With my new lawyer , it has been about 2 years.
If I have the energy , I will try to add more information about what has helped / is helping me with this process of fighting for disability . Struggling with the stress of this mess creates even sicker people. For me , I have gotten much worse from all the stress of the process . I must go on though , there are no other choices for me. The 'system' continues to fail the majority of us.
Winning your Social Security Disability Case
TIPS ON CLAIMS SUPPORT GROUPS LINKS IDEAS ADVOCACY
FIGHT FOR YOURSELF NEVER GIVE UP
INFORMATION FOR PARENTS OF DISABLED CHILDREN ( RIGHTS AND SUPPORT)
ALERT FOR ALL THOSE CONCERNED ABOUT DISABILITY RIGHTS AND SSDI IN THIS COUNTRY !!!!!!!!!!!
PLEASE READ THE FOLLOWING AND RESPOND TO THE REQUESTS IF YOU CARE ABOUT WHAT THE GOVERNMENT IS/IS NOT DOING WITH DISABILITY BENEFITS.
I got the information below from a disability support site called :
SOCIAL SECURITY DISABILITY COALITION
03/21/10 : New address(es) for the Social Security Disability Coalition : http://groups.yahoo.com/group/socialsecuritydisabilitycoalition/
I ask that all members here please immediately take a few seconds to contact your elected officials on passing total reform of the SS Disability program, and getting the SSA proper funding in order to make this a reality once and for all. We have made it very easy for you to accomplish this task. A form letter has been set up for you through the Center For Disability Rights and Capwiz. All you have to do is put in the info about you that it asks for, in the take action section of the screen, hit the send message button, and the letter will automatically be faxed to all the proper Congresspeople that it needs to go to.
Demand Reform In The Social Security Disability Program
You cannot get any easier than this to make a difference. There are some things happening in the next few weeks in regards to funding for the SSA etc and Congress needs to be made aware of how urgent this situation is for all of you. Also please send the link to your family members and friends or anyone else you can think of.
It is a fact, that disabled Americans are the LARGEST minority group in this country, and it is time we use our strength to get these problems solved now. Here is your chance to use that power.
Also please tell all the media outlets you can (newspapers, TV, radio) about your problems with the Social Security Disability process, the Social Security Disability Reform Petition and the Social Security Disability Coalition.Find and contact national and local media:
NOTE: If you get any interest have them contact me at:
So please act now and take this chance to make a difference. Thanks as always for your support - we could not have come this far without you. Be well!
Sign the Social Security Disability Reform Petition – read the horror stories from all over the nation:
President/Co-Founder – Social Security Disability Coalition"
IF YOU ARE NOT PART OF THE SOLUTION , YOU ARE PART OF THE PROBLEM !
The following page has many varied links that you may find helpful in the battle. It is a link page that has been put together by a group of social security lawyers to help their clients :
NEED HELP WITH HOUSING ?
"Opening Doors is a housing initiative designed to provide information and technical assistance on affordable housing issues to people with disabilities, their families, advocates, and service providers across the United States." From what I have read on this site , they help with finding housing and obtaining it . I am not sure if they have housing themselves. It does seem like a good organization though.
This website has support groups . What is so different about that ?
They have over 500 groups.
There are professionals to talk to .
They are support groups for TONS of different areas of life .
Instant help for how to feel better.Find someone in your "boat" including very rare conditons. Check it out. Just the name is comforting . A place where you do not have to pretend that everything is alright.
"How DailyStrength Works
- Sign Up for a free account and be as anonymous as you want to be
- Start A Wellness Journal. Sharing your story with others is a crucial part of your healing process.
- Invite Friends and Family. Harness the power and passion of the people that love you.
- Join a Support Community and instantly meet other people who share your challenge.
- Make Online Friends with other Members to easily stay up to date with each other's progress.
- Give and Receive Support. Send a private messages or a Hug to a Member in need.
- Get Email Updates with recent community activity and your Friend's progress.
Most everyone has a serious personal challenge themselves or has someone close to them that does. DailyStrength is a collection of safe, anonymous, online support groups focused on over 500 specific challenges to help people overcome their personal challenge or support a loved one through theirs.
DailyStrength isn't just for those living with a challenge themselves - care givers, supporters and medical professionals are welcome as well. Everyone can use a helping hand once in a while and our mission is to provide a safe forum where people can connect with others who know exactly what they're going through. "
03/31/08 TIPS FOR EMERGENCIES from the American Red Cross:
Specific Information for People with Disabilities:
If you use a battery-operated wheelchair, life-support system or other power-dependent equipment, call your power company before rolling blackouts happen. Many utility companies keep a list and map of the locations of power-dependent customers in case of an emergency. Ask them what alternatives are available in your area. Contact the customer service department of your local utility company(ies) to learn if this service is available in your community.
If you use a motorized wheelchair or scooter, have an extra battery. A car battery also can be used with a wheelchair but will not last as long as a wheelchair's deep-cycle battery. If available, store a lightweight manual wheelchair for backup.
If you are blind or have a visual disability, store a talking or Braille clock or large-print timepiece with extra batteries.
If you are deaf or have a hearing loss, consider getting a small portable battery-operated television set. Emergency broadcasts may give information in American Sign Language (ASL) or open captioning.
FIGHTING FOR DISABILITY -
We need all the help we can get on this one. It seems that , at least in my case , my social worker is working against me , not for me.
The system can't win !
Many of us are suffering out here ,and we need to show people how we are being treated.
If you are in danger of becoming homeless , you may be able to submit a dire needs letter that will make your case go faster. This seems to be one of the only suggestions that the agency gives out for "help" in making a case go faster :
Here is another link that may be helpful if you are fighting for social security.
Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.)
Experts in insurance issues such as continuation of coverage and high risk pools. Downloadable brochure available.
This is a guide from the patient advocacy- this is for appealing a case for insurance- people (pdf.) that you might find helpful :
Your Guide to the Appeals Process (document)
This organization is for global change in the way that people with disabilities are treated.
They do advocate for families that have disability challenges too . Here is some information from the site :
Although TASH 's work is often on a global level, equally, if not more significant, is the direct support we provide individuals with disabilities and their family members. We serve as a clearinghouse for the daily reporting of treatment that is unjust or that limits opportunity. We provide information, linkage with resources, expert assistance toward fighting inequities, legal expertise, and targeted advocacy. We bring to the assistance of individuals in need, the backing of our thousands of members worldwide and the support of a national organization committed to social justice for all people.
Another very good page link from the people at About dot com:
If you want to get riled up about disability and Social Security reform , here is a petition that lists some facts. It seems to be a paper from 2003 , but it's sad that it still applies.
Here is a support forum and a group that searches for and stores information about SSD:
"The Social Security Disability Coalition
offers information and support with a focus on reforming the Social Security Disability System. We continually collect information related to the protocols used by the Social Security Disability Insurance program. We collect this information to search for systematic patterns in those protocols, and or arbitrary actions, that cause one of our frailest populations, the disabled, undue stress and economic hardship. Concerned by what transpires with ALL aspects of the Social Security Disability claims process, and the final outcome, we look for patterns of both abuse and success where available, and examples of the hardships experienced during the entire process. "
Being disabled seems to be a neglected are of PREJUDICE in the world.(As is being poor )
There are people fighting for gay rights ,and ethnic issues ,and all sorts of rights , but how about RIGHTS FOR THE DISABLED !?
WE ARE FIGHTING PHYSICAL AND MENTAL CHALLENGES
TRYING TO FIGHT FOR OUR RIGHTS !
DO WE ROCK OR WHAT ?
Here is another group that is fighting.
"The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society."
I was watching a show by Tyra Banks today where she talks about ignorance and prejudice . She had white people dress as black people, and the other way around , to promote acceptance and empathy. She also talked about people and their ignorance against Muslims and others that aren't "just like me , so they are wrong or going in the wrong direction , or weird"
What would it be like if she had people go around in a wheelchair all day and try to use the restroom , enter different businesses ,and ride the bus ? Waiting at a bus stop with a disability is hell when it is cold and raining , or when there is a blizzard outside. There is no choice to stay home though , if you need meds or have to see the doctor and the bus is the only way to get there.
It is time that people with disabilities have a voice that is listened to.
Here are some people who are doing something:
Here is someone who is being active about disability :
"We are a Worldwide disability civil rights, ADA, advocacy, support, information and discussion group.
We try to make the people aware of the needs and laws of the disabled. We share newsletters and discuss them. Our members are kept well informed. We also try to assist each other to the best of our abilities. We welcome members who are either disabled with any disability, caregiver, advocate, professional or non-disabled.
Our members are welcome from throughout the United States and Worldwide.
We have our own archives, photo albums, link sites and polls. Feel free to research or add to any of these resources.
This group was founded on July 5, 2002. The reason I founded it was because of the horrible manner other people and myself were being treated in other groups. I decided I wanted to help others as much as I could so my group would not be like the others and that I would treat others the way I would want to be treated... " -Alan, Founder / Moderator
Another group that is fighting for our rights :
"Over 54 million people in this country suffer from some form of disability. No less important are the reported statistics of discrimination and hardship they go through everyday!"
"Whether you are disabled or are close to somebody who is, this site is dedicated to helping everyone understand the plight of the disabled and the continued struggle for acceptance and integration into mainstream society. "
"Since its inception, the Philadelphia-based Disabilities Rights Advocacy Group Inc. (D.R.A.G.), has been a major lobbying force for curb cuts along City sidewalks, making Automated Teller Machines (ATMs) accessible. This action set a National trend, as a result, now ATMs are accessible across the Country. D.R.A.G. Inc., is responsible for the installation of ramps and lifts at many Federal, State, and Public Facilities. The Organization is continually encouraging and monitoring the private sector to upgrade their building facilities and make them accessible and more user friendly to the disabled. "
"The Disability Rights Education and Defense Fund
founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.
The mission of the Disability Rights Education and Defense Fund is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development."-
Unfortunately , many of us with disabilities are having to take legal measures in order to survive. Reform is a key word here !
The more we know , the better it is for our case. Write out your daily needs , your challenges , keep a journal , be proactive.
We might educate some lawyers and doctors too , who sometimes do not research the disability you have.
Let people know you mean business.
Advocate for yourself.
IF YOU HAVE A DOCTOR OR A LAWYER WHO SEEMS DISINTERESTED, OR DOES NOT BELIEVE IN YOU , OR DOES NOT KNOW MUCH ABOUT YOUR DISABILITY
THEY ARE NOT YOUR ADVOCATE !
GET NEW HELP.
I wasted over a year with a 'friend' who was a lawyer . He didn't want to admit that he couldn't handle a disability case . (he is a tax lawyer)
They are providing you with a service , not the other way around.
Always remember that YOU are in charge. Not the medical profession ,and not your lawyer( but they do deserve as much respect and tactfulness as you do)
YOU direct where things go with you.
WHAT IS THAT TEST FOR ANYWAY ? WHY DO I HAVE TO HAVE ANOTHER TEST ?
Another site that will help us know what is going on with our situation is this one , for finding out what any test we might have is all about
This is a link page for disability law . Do they live up to their word ? You decide ! ; )
Here is another page full of tips that will supposedly help you speed up the process of getting your disability income . As with all other sites , YOU decide whether it will help or not.
I did find some information that I didn't know about.
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. Located in Minneapolis, it serves families across the nation, as well as those in Minnesota. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities.
Here is another site with many pages addressing disability challenges .
If you are looking for disability , daily living and other resources that are in your state , go to this page and click on your state on the map (ignore what it says about Katrina because there is so much more than that available )
"Best Information on the Web" Resources for disibility and adaptive technology on the net . ( You be the judge - are they really the very best on the web ? )
MORE LEGAL ASSISTANCE ,some by state
|Entire US|| Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.) |
Experts in disability law, can answer questions and assist with process. Services are provided to persons with certain rare chronic conditions at no cost, and are confidential. A.C.C.E.S.S. helps you to find programs for which you qualify, navigate state and federal entitlement programs, and explore eligibility for health insurance.
|Entire US|| National Disability Law Contacts |
|Entire US|| National Disability Rights Network (NDRN) |
Nationwide Network of Congressionally mandated, legally-based disability rights agencies.
|Entire US (Spanish)|| Sin Barreras: Proyecto De abogacia para la Comunidad Latina |
Advocacy for Patients with Chronic Illness, Inc. se enorgullese al anunciar formalmente la creación de Sin Barreras: Con esta adición, nos hemos convertido en la única organización que se enfoca en la enfermedad crónica y todos los asuntos que afectan a la comunidad Latina.
|AZ|| Arizona Center for Disability Law |
|NV|| State of Nevada Department of Employment, Training & Rehabilitation |
|NV|| Nevada Disability Advocacy & Law Center |
|NY|| Office of Advocate for Persons with Disabilities |
|OK|| Oklahoma Disability Law Center |
|WI|| Wisconsin Coalition for Advocacy |
I just found this site on the web ( 12/5/07) ,and it looks interesting .So far , I really like what they have to say . I also like that there is an online community . Those of us who don't get out enough because of our disabilities need all the support and community as we can get . Here is what they say about themselves :
A FREEBIE FOR THOSE OF US WHO ARE DISABLED ( G-d knows we need all the freebies we can get !)
Having trouble finding or keeping a doctor ? Try this search for Medicare doctors . By location , and name.
For help with paying for meds or assistive devices , food , rent , transportation , free and low cost living ideas ,and more , go here :
Well , after fighting for *5 years for my disability , I lost at the stage with the administrative law judge. This judge is known for categorically turning down disability cases . There are many complaints about him and he may be 'leaving' my district soon .I am currently one of 5 from my lawyers firm to be denied one right after the other. So , I BATTLE ON ! I have no choice . Even posting on Aidpage has become more limited because of pain and fatigue issues. At the suggestion of Emil , architect of Aidpages , I may very well be documenting my case on Aidpage . I will be consulting my lawyer soon on this matter ,and believe me , I will go at it with all guns if given the OK by my lawyer.
09/02/09I lost at the council level quite a while ago . I have been very weak and sick and am just starting to feel better. Now I find I need another operation. I take 27 meds now and still Medicaid won't cover me? Really what does it take ? You can see how closely that I can identify with my fellow disabled Aidmates !At present I am filling out papers for medical care and coverage from a major hospital.If they accept me,I will recieve care for a year for no cost. Please keep me in your prayers ! -soulight