Information for anyone with a disability

I have had MS for 13 years so I know the pain and difficulties of living with this terrible disease.  I work for a Federally Funded Program that is available in every state. So I'm going to provide everyone with this information. The one thing I have learned in working in the disability field is that no ONE tells you anything about resources or information that can make your life better.

A few weeks ago Lulu posted information on the community board and she asked me to add to it. The pages are called Resources I,II & III.

Financial Help from Local Multiple Sclerosis Chapters:

Now remember these are non-profit organizations who work off of donations & grants.
Some local chapters will pay for utility bills...like my gas bill during the winter.The are a non profit organization so their funds are limited. They won't pay for medication, doctor bills, etc.

(Financial Help for Paying for the Co-insurance/ Deductible)

The National Organization for Rare Diseases - We are # 100 on the list.
This  organization that will help pay for co-pays and co-insurance for treatments like Tysabri, such as The National organization for Rare Diseases. They pay directly to the doctor up to $1000.00. I'm not going to lie to you it's a large application and then your name placed on a waiting list. They too are a non-profit and work off of donations. They have called me to remind me that I'm still on the list. I wouldn't hurt to get on the list, because with our disease we will have long term medical bills.

www.rarediseases.org

CRAB Programs and Tysabri
The CRAB programs all have similar programs....you just have to call and inquire about them. You do have to meet some qualifications with their programs, but again it never hurts to ask. You can also be on signed up with several agencies. I am.

One of the most important resources you will ever need:            RESNA
They have numerous resources for people with disabilities. I have provided you a link to a directory of  all the states in the US with Assistive Technology Programs. These are federally Funded Programs over seen by RESNA that provide locations for people with disabilities to borrow Durable Medical Equipment (shower chairs, wheelchairs, etc), there are Donation Programs were medical equipment and AT can be donated to you if It has been previously donated to your states program, and last but not least they have what is called The Equipment Exchange Program. This is a program where people are trying to sell or buy equipment from other people.  (Ex: Vans with lifts)

Depending on what you are needing and what state you are in......the program may suggest an Occupational Therapist or Physical Therapist  look at the equipment before they loan/donate it out. That is for your protection and the protection of the program.  My state requires a prescription from a doctor for a wheelchair and a few other items. Every program is different, so call or email to find out their requirements. Most all programs have websites with list/pictures of equipment.

Most all of the state AT programs have a website (in contact directory that explains the program policy and procedures, loan/donation equipment, durable medical equipment, trainings, etc.  I can tell you there are alot of links to agencies, vendors and state and national events.

These programs are NOT based on income, although some states require a deposit depending on the  
item. YOU NEED TO CALL THE PROGRAM IN YOUR OWN STATE - MOST STATES REQUIRE THAT YOU BE A RESIDENT!

Medicare patients are usually reminded of what they can get brand new from Medicare, but items are still donated to them.... but it is refurbished. Medicare does have rules about not purchasing items for the bathroom, and wheelchair can only be replace after 5 years.

Link for RESNA  Disability Services:
http://www.resna.org/content/index.php?pid=135      (RESNA's Home page for info about program)

Link for RESNA'S State Directory:
http://www.resna.org/content/index.php?pid=133          (RESNA's State Program List)

MEDICARE:
Link to Medicare Home Page:
http://www.medicare.gov/

What people w/Medicare need to know:
http://www.medicare.gov/Ombudsman/omoneedtoknow.asp

Medicare Drug Plan:
http://www.medicare.gov/pdphome.asp

MediPak - http://www.arkbluecross.com/Medi-PakChoice/    (Make sure before you sign up for any additional plans that you verify none of you other Medicare services will be terminated)

MEDICAID:
Medicaid is governed by each state, so contact your local Medicaid office for more information.
http://www.cms.hhs.gov/MedicaidGenInfo/   (It is best to call your local Medicaid off first)

MEDICARE/MEDICAID ADVOCATES;
Some non-profit organizations have free Medicare and Medicaid advocates to help people with questions. The best way to find out what disability organizations are available in your state is to call your states AT program (listed in the contact directory) or do a Google search on non-profit agencies for disabilities in your city.

My favorite Disability Rights :
http://www.ndrn.org/aboutus/PA_CAP.htm (National Directory

PROTECTION AND ADVOCACY SYSTEMS (P&As) like DRC are established in every state and U.S. territory. We carry out activities under several federal programs to provide a range of services to advocate for and protect the rights of persons with disabilities throughout the state.

[Fluffysmom]

Wow, this is good stuff!  I hope it gets put in the Health Pages; some of it I could use it if I ever get a diagnosis, and there is other stuff that is just good to know!

Thanks for taking the time to share this with us all!

Kathy

[Lulu54]

Kathy,
Lori has put this on the HP's - or at least most of it - as a companion piece to our HP on WWW resources. There continues to be programming problems with the MedHelp site and evetually they will get it corrected and the HPs will make complete sense.  In the meantime it was too good of information to just be sitting there with no one using it!

Off to basketball season opener tonight - Dayton Flyers - div. 1 Mens but also go to the women's games.  I can't believe its a sunday night game but oh well, they are always fun.

Later, Lu

[SharJ]

I read all the information you have provided. I know it will be useful for a lot of members who are in the same situation I am in.

Thank you for taking the time to provide all this information that I know will get members started in the right direction where to look for what ever assistance they may need.

We all will  I am sure will find this helpful or can pass it on to someone else that can use it.

Sharj