posted 20 June 2005 11:32               

Getting to the Doctor:
Affording the Medication:
Emergency Funds:
Gathering your Resources:
Know your Expenses:
Deduct your Expenses:
Paying your Bills:
Learn to Budget:
Cutting Back:
Disability Issues:
Other Programs:
Home Loans:
Bankruptcy:
How you can make a difference:

Getting to the Doctor:

1. Talk to the Doc-
Never be hesitant to let your Doctor know your financial circumstances. Chances are that they have ways to help…but you must ask.

2. Local Transportation-
Some states offer a local transportation program for persons who are disabled. For more information, call the information/general assistance numbers at your local bus stations, train stations, and airports. In addition, the Metropolitan Transit Authority in many cities offers special buses and other services such as discount fares, "reserve-a-ride programs, or regional ride sharing. Medicaid can also offer free transportation to your doctor's office. For details on available services, check with your local Metropolitan Transit Authority.

3. Share a ride-
Chances are that others are heading your way too. Try to find fellow patients of your doctor, and see if carpooling is available.
There are also national ride share organizations. www.erideshare.com
(Google for others)

4. Greyhound-
Buses go just about everywhere for a fraction of the cost of flying or driving yourself. Greyhound offers discounts for the following: children, students, military, veterans, personal care attendants, disabled, and seniors. www.greyhound.com

5. Amtrak-
If you are fortunate enough to be near a train, take advantage of that opportunity. Traveling mid-week is less crowded and quieter too. Amtrak offer discounts to children, seniors, veterans, students, military, AAA members, and NARP members. Amtrak has announced that it will add to its system only new cars fitted with special facilities for people with disabilities. Information on accessibility of trains and stations and assistance available to passengers who are disabled or elderly may be obtained from an authorized travel agent or by calling Amtrak at 800/USA-RAIL. Travelers with disabilities who have a card or physician's letter showing disability are allowed a 25 percent discount on round trip travel by Amtrak with the exception of certain holidays. Amtrak also has a brochure, Access Amtrak, for travelers with disabilities. To request a copy, write: Amtrak Distribution Center, Itasca, IL 60143.www.amtrak.com

6. Flights for free- http://www.aircareall.org/listings.htm

7. Accommodations-
Many Practices have set up accounts with local hotels or motels to offer their patients a reduced rate. Ask your Doctor first, and then call around to find a place that participates.

8. The Ronald McDonald House-
Ronald McDonald Houses provide a home-away-from-home for families of seriously ill children who are receiving treatment at nearby hospitals and Doctor Offices. www.rmhc.com

9. Practice smart shopping-
It is your responsibility to find out in advance the costs of your Doctor visit, including all testing, initial consultations, phone consultations, follow-up appointments, and insurance reimbursements. By doing the legwork before you make a Doctor decision you will save on time and expenditures. Check referrals carefully. Get quotes. And be sure that all charges are cleared by you in advance.

Affording the Medication:

1. Generics-
In many cases, the generics are just as good as the name brands. Ask your Doctor or Pharmacist if a generic replacement is available.

2. Shop around-
Not all businesses are created equally. Taking the time to call around and compare prices may be the most valuable way to spend your time. This is true for prescriptions, supplements, and IV or IM supplies. www.costco.com

3. Consider On-line sources-
There are reputable sources for on-line prescription medications and supplements. Be sure to do your homework here.

4. Leftover supplies-
No one wants to throw away what they can no longer use. For the cost of postage, you would be surprised how many fellow patients will be more than happy to send their leftover supplies. Ask, and ye shall receive!

5. Free or reduced priced medicines-
Many big and generous pharmaceutical companies will provide medications at free or reduced costs. Each company has its own criteria, but you may be surprised by how lenient they are.
http://flash.lymenet.org/ubb/Forum1/HTML/004031.html

Other sites:
www.benefitscheckup.org
www.freemedicineprogram.com
www.healthynh.com
www.helpingpatients.org
www.infuserveamerica.com
www.needymeds.com
www.needymeds.org
www.phrma.org
www.pfizerforliving.com
www.rxassist.org
www.rxforohio.com
www.rxhope.com
www.themedicineprogram.com
www.TogetherRX.com

6. Buy as Needed-
If this is a new medication for you, it may benefit you to only purchase a trial amount of this drug to start. One of the worst feelings is having to dispose of unused medication.

7. Do it Yourself-
If you are taking IV medications, find out if you can learn how to infuse and change dressings on your own at home. Once the proper techniques are learned, there usually is no need to keep paying a nurse. Of course, if you are unable to do this yourself, find a friend or family member who can accept this responsibility.

8. Tailor your protocol-
Speak with your Doctor about prescribing for your income. Perhaps by changing one or two meds, you will be able to afford to keep going. Another option may be to pulse your medication. Your Doctor will know if this is an option for your needs.

9. Free Samples-
Many companies will give samples of their products to Doctors to try on patients. If your Doctor has free samples of a medication that you need, he will usually gladly share it with you.

Emergency Funds:

1. Temporary Assistance for Needy Families (TANF)-
This program gives emergency cash assistance to families on a time-limited basis. Some states might use a different name for this temporary funding, so ask. Check the government section of your local phone book under the county HHS (health and human services) office nearest you. Documentation may be required.

2. Locally based organizations-
Emergency Assistance is also available from locally based organizations including community action agencies, churches/synagogues, homeless shelters, and domestic violence centers, among others. (It is not always necessary for you to be a member of a church or other house of worship to receive emergency assistance.)

3. Unemployment Insurance (UI)-
If you have become unemployed, this insurance will help while you seek another position. It does not apply if you left your position without being terminated. Contact your state unemployment office.

4. Workers' Compensation-
This is a type of insurance that many employers are required to have by the federal government. It usually covers injury on the job, but may also cover some occupational diseases. Contact your nearest Worker’s Compensation office/ commission.

Gathering your Resources:

1. Retirement-
You may find yourself having to dip into your retirement accounts. 401K, PERA,

2. Sick Leave-
Now is the time to find out exactly what your work offers. Some positions offer a sick bank where you can “deposit” unused sick days for future “withdrawals”. Medical leaves are also an option worth looking into.

3. Borrowing-
A rich uncle may not be your only source. If your credit is good, find out about low interest loans.

4. Using Credit-
Many credit companies are now offering 0% interest on new accounts for a specified period of time. Be sure to read the fine print.

5. Downsizing-
Low income housing is an option in most locations; get on the list now if you can.
Some medical expenses may be deducted from your rent with a letter from your Doctor. Perhaps finding a roommate would suit your needs better. Ask at local churches, universities, and reputable organizations. If public transportation is available, you might consider selling your vehicle.

6. Charitable Organizations-
Local churches and other charitable organizations are ready and willing to help. Many offer free rides, food, clothing, counseling, and spiritual support.

7. Affiliations-
If you were a member of any organization in your professional life, look into funds here.

8. Liquidating-
Sell what you don’t need and donate the rest for a tax deduction. Some avenues include EBay, garage sales, second hand stores, antique stores, consignment stores, estate brokers, flea markets, used book stores, sporting equipment stores, music stores, etc.

9. Hidden talents-
Can you use your talents to teach lessons or create something for a profit? Can you spare an hour for babysitting or pet sitting?

10. True friends-
Your true friends will come running when everyone else is leaving. They want to help, so ask.

11. Family-
Can other family members take on a few responsibilities for you? Many families want to help, but just don’t know what you need. Children are much more adept than we give them credit for.

12. Senior Services-
Seniors are entitled to many discounts and services. Check all local and state patient assistance programs.

13. Support groups-
Here you will find others dealing with many of the same situations. Get involved.

14. Women’s Resource groups-
Sometimes it pays to be female, find out if there is a resource center in your area.

15. Fundraising-
Funds can be generated for medical assistance, by enlisting local organizations to help sponsor these events. Walks, runs, movies, garage sales, diners, auctions, concerts, etc., are just a few of the many forms that fundraisers can take.

Know your Expenses:

1. Stop surprise bills-
If you are doing your homework, there should be no surprise bills. Take the time to call in advance of any tests to be completed so you will be ready when the bill arrives in the mail. It may pay to shop around here as well, not all places charge the same for the same procedure. There also may be a program in place for needy patients for many expensive tests such as MRIs. Ask to set up a payment plan that will work for you.

2. Find out what your insurance will and will not cover-
Call your company in advance to find out what is and isn’t covered under your plan. Some testing may be divided over two days in order for insurance to cover the costs.

Deduct your Expenses:

1. Save all receipts-
This includes all medical bills, prescriptions, over-the-counter medications, supplies, etc. Remember that eye care, dental, and psychotherapy count also.

To qualify for medical deductions for tax purposes your medical expenses need to be at least 7.5% of your income. If you are filing jointly, this would involve medical exp. for your spouse as well as your children.

2. Allow for Travel expenses-
Mileage to and from your Doctor, other applicable travel expenses and lodging accommodations can also be deducted, so keep track.

3. Insurance contributions-
Employee medical insurance contributions are deductible only if this cost was not paid pre-tax.

Paying your Bills:

1. Utilities-
Some utility companies have a needy program; contact your local companies to find out what is available to you.

Programs may be based on income or medical needs. There may also be a plan to pay a set fee each month that does not vary throughout the year. This will help budget through the cold winter months or the hot summer months when utilities rise. (see below under Other Programs)

2. Housing-
Most lenders will offer a grace period for mortgage payments. Find out what your lender will and will not offer.

3. Medical-
Many states offer help with medical payments. Qualifications vary, so be certain to ask.

2. Negotiating-
Let your creditors know what is going on. Never ignore your bills. A small token payment is better than none at all.

3. Pay on-line-
Many companies will accept payment via the internet; this saves you time and money.

4. Automatic deductions-
Many companies will automatically deduct your monthly bill from your checking or savings account, also saving you time and money.

Learn to Budget:

1. Figure out your expenditures-
Gather all of your monthly bills, your checkbook, and credit card statements for the last year to begin a list of your expenses. These may include:

Housing
Gas
Water
Electric
Telephone
Internet Service
Food
Home Insurance
Property Taxes
Home Repairs
Health Insurance
Education
Car Repairs
Gasoline
Car Insurance
Medical
Prescription
Clothing
Personal Care
Loans
Entertainment
Vacation
Gifts

2. Decide what can be put on hold-
Never neglect your bills, but find out if you are able to reduce payments temporarily. Try to hold off on all non-essential purchases.

Cutting Back:

1. Start a Garden-
For the price of one head of lettuce, you can purchase a dozen packs of seeds. Use your window sill and grow your own…it tastes better and is healthier anyway.

2. The barter system-
Trading talents and services is a lost art that many would love to reinitiate.

3. Reduced pleasures-
Many schools offer reduced services by experts in training. Look for dental, culinary, massage, healthcare, pet care, and other institutions that offer these services.

4. Free Pleasures-
The Freecycle Network™ is made up of many individual groups across the globe. It's a grassroots movement of people who are giving (& getting) stuff for free in their own towns. www.freecycle.org

Just because you are struggling now, don’t deprive yourself of the available activities that can be enjoyed at no cost. Utilize your local library for movies, books, newspapers, magazines and lectures.
Most museums, botanical gardens, pools, amusement parks and other state run organizations have free days open to the public.
Take advantage of summer outdoor concerts, art fairs, flea markets, etc. The fresh air will do you good.

5. Buy during off season-
Many items can be purchased on sale if you shop during “off season” or during a “clearance”. This takes planning ahead, but is well worth the extra effort.

6. Check second hand and outlet stores, garage sales, and EBay-
There is a vast and growing enterprise of thrift stores and outlet stores in every location. These shops usually contain gently used as well as new items for a fraction of the retail value. www.EBay.com

Disability Issues:

OK…no one wants to go on disability, but, it happens, so understand that this is what the program was designed for… to help those in need. Remember, this doesn’t mean it will be forever.

1. Hire a Lawyer-
If you need to find an attorney to help you file an SSDI application or an appeal, contact the National Organization of Social Security Claimants' Representatives (NOSSCR) at: 800/431-2804 or visit its website at: www.nosscr.org . The website also contains frequently asked questions and resource information for SSDI. Note: Most private attorneys and others who represent claimants accept cases on a contingent fee basis so no fee is charged unless the claim is successful.

2. Understand the process-
Social Security Disability Insurance (SSDI) benefits are paid to workers under age 65 when earnings are lost or reduced due to disability. You may be considered "disabled" if you have a physical or mental impairment which (1) prevents you from working, and (2) is expected to last for at least 12 months or result in death. Before you can apply for Social Security benefits, you must have credit for a specified amount of work. The exact amount of credit depends upon the worker's age. For additional information on filing procedures and requirements, contact your local Social Security Administration office in the U.S. government section of your phone book or visit their website.

Supplemental Security Income (SSI) makes monthly payments to people who are aged, disabled, or blind and have limited income and resources (assets). To receive SSI payments on the basis of disability or blindness, you must meet the Social Security Administration's definition of "disabled" or "blind", have limited income and resources, and be a citizen of the U.S. or its territories. Social Security work credits are not necessary to obtain SSI payments, so you may be eligible for SSI even if you have never worked. It is also possible to receive SSI benefits and qualify for Social Security Disability, if you are eligible. States may add to the federal SSI payments and provide Medicaid, food stamps, and various other social and rehabilitation services. For information about SSI, contact your local Social Security Administration office.
Social Security On-Line: www.ssa.gov

Medicaid (Medical Assistance Program) is a joint federal/state program which provides physical and related health care services to low income persons. Individuals with disabilities may be eligible for Medicaid on the basis of income. Because eligibility is determined by your state program of public assistance on the basis of broad, federal guidelines, there are geographic differences between eligibility requirements and the types of services covered. Generally, a person may be eligible for Medicaid if (s)he is receiving welfare, other public assistance benefits, or Supplemental Security Income or is blind or disabled. Medicaid services are available in all states. Individuals with higher incomes may be eligible for Medicaid Supplemental Medical Care Assistance, or their children may be eligible if medical expenses exceed a given percentage of their annual income. Information on Medicaid is available from your local or state welfare or public assistance office.

Medicare health insurance program is designed to serve everyone over 65 years of age as well as people with disabilities under 65 years of age who have been approved for Social Security disability benefits for a total of 24 months or who need dialysis treatments or a kidney transplant because of permanent kidney failure. The program is not based on income and is available regardless of financial need. Medicare has two parts: Part A: Hospital insurance at no premium that helps pay for care while in the hospital and for related health care services after leaving the hospital. Certain deductibles and coinsurance amounts apply. Part B: Voluntary medical insurance at a monthly premium that helps pay doctor bills and other approved medical services. More information about Medicare is available from your local Social Security Office

3. Gather the paperwork-
Documentation is the key to applying for these government assistance agencies. You will need proof of your health situation, including bills, income verification, Doctor letters, receipts, evidence that you support yourself, bank statements, vehicle information, photo identification, and social security card. Be certain to find out in advance what is required.

4. Muster all of your Patience-
This may take awhile; some patients wait 6 months to years. It is best to have a back-up plan.
For more information see http://www.lymediseaseassociation.org/SSI.html .

Other Programs:

1. Food Stamps-
These are coupons that can be used the same as money to buy nutritious food. Contact the nearest office of your state’s health and human services department.

2. Housing-
HUD (the US Department of Housing and Urban Development) provides several programs for assistance on the state and federal levels. These may include Section 8 housing and emergency shelters, Eviction Prevention, Title 1 Home Improvement Loans, Farmers Home Administration loans, housing assistance payments, rental assistance payments, security deposit assistance, Home Investment Partnership programs, Mutual Housing Association grants and loans, and Small Community Development Block Grants. Contact your state HUD offices.
Another avenue if you qualify are Centers for Independent Living. Check your local listings.

3. Utilities-
LIHEAP is a federal run service that provides assistance designed to help qualified individuals pay their bills. Contact your state government department of health and human services. Also contact your state utility company to find out about reduced payments.

4. Community Health Clinics-
Many communities offer clinics where services are available for free or for a substantially reduced cost. Check your local phone book or contact your nearest state health and human services office.

Home Loans:

1. Home Equity Line of Credit (HELOC)-
If you need to borrow money, home equity lines may be one useful source of credit. Initially at least, they may provide you with large amounts of cash at relatively low interest rates and they may provide you with certain tax advantages unavailable with other kinds of loans. Contact your lender for more details.

2. Second Mortgages-
Some second mortgage loans may extend for as long as 15 or 20 years; others may require repayment in one year. Be sure you understand how much your new monthly payments will be and what they will cover.

3. Federal Housing Administration (FHA)-
While FHA does not make or buy loans, they insure FHA loans so that if you default on the loan, the lender will get reimbursed. You may be able to get an FHA loan with a low down payment of only 3% of the loan amount or less

4. Veterans Association (VA)-
If you are a veteran or qualify by military service or other entitlements, FHA mortgage insurance can also be combined with a guarantee from the Veteran's Administration. VA mortgages were created to help veterans achieve the American dream and buy their own homes. VA loans offer low to no down payments with many of the same benefits as an FHA loan.

Bankruptcy:

As a last resort, there is the process of bankruptcy. Be certain to check all the alternatives first, as the effects of filing are long lasting. Each state has its own Bankruptcy laws. A good comprehensive guide is available at www.mortgage101.com .

How you can make a difference:

1. On the political front-
The best way to make your voice heard is to become involved with current political actions. You can usually write, call, or email to support local, state, and federal legislation that will help all patients. Every voice counts, so PLEASE urge your friends, family members, and associates to join in this effort.
Please see www.lymeinfo.net for the latest information.

2. Helping others in need-
There are several wonderful non-profit organizations in place that accept donations specifically earmarked for Lyme disease. Check with your local support groups or see the Lyme Disease Association website at www.lymediseaseassociation.org .
Donations can be of any amount.

3. Support Groups-
Most states and some cities have local support groups. Meetings are a wonderful opportunity to get to know fellow patients and gather information.
Check listings on the web, or see http://www.lymenet.org/SupportGroups/

4. Mentoring-
Becoming a mentor is a rewarding way to “give back”. You may mentor by phone or email to someone who is newly diagnosed and frightened, and doesn’t even know what questions to ask. By just sharing what you have learned, you will be helping more than you realize.

5. LD awareness products-
Purchasing products from LD groups is a great way to support the cause.
Lyme Out http://www.lymeout.org/fundraisers.html

6. Become an Advocate-
You are about to become an expert on Tick Borne diseases whether you want to or not…share what you learn in order to help prevent new “experts”.

Distribute information http://www.lymeinfo.net/advocacyinfo.html
Help fellow LD patients www.lymenet.org

7. Attend LD events-
There are several events happening nationwide that bring awareness to the general public. Show your support by attending these events. Please see www.lymeinfo.net for the latest information.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

THANK YOU to everyone who helped with information in compiling this on-going work. Your willingness to share of your time and experiences is invaluable.

Sincerely,
Melanie Reber
Co-founder, Colorado Support System
melaniereber@netscape.com

Sources: www.fmpartnership.org www.lymeinfo.net www.lymenet.org www.mortgage101.com www.lymediseaseassociation.org www.ssa.gov www.nosscr.org www.freecycle.org www.costco.com www.erideshare.com www.greyhound.com www.amtrak.com http://www.aircareall.org/listings.htm www.rmhc.com

posted 20 June 2005 12:52               

Add my new favorite place to buy supplements!
www.vitacost.com

Way lower than most places.

posted 20 June 2005 15:07               

I may have missed it, but I saw the info on SS Disability but I didn't see anything on private disability.

Many people have disability coverage through their jobs. This is usually easier to collect on than Social Security -- but it is still a big hassle.

You can be elgible to receive benefits from both Social Security and private policies in some cases. Often the private policies settle on a lump sum buyout when it goes to court and such a settlement has no effect on the Social Security amount which is based on prior work earnings.

posted 20 June 2005 15:46               

I just love what we can accomplish when we put our minds together!

Keep the suggestions coming!

Love,
Melanie

posted 20 June 2005 23:26               

For food: the SHARE food project is a very cool thing. For $15.00 you get $30-35.00 worth of food.

You pay in advance for the month and come later to pick up your box. It's a bunch of food for very cheap.

All are eligible. What is asked in return is an 1 to 2 hours of community service/month. Which can be absolutely anything. Some people help organise the food pick-ups while others do things like give their time to Lymenet.

posted 21 June 2005 11:23               

That is a wonderful resource...

I just googled my state and “Foodshare”, and came up with many sites that operate food banks, and other programs.

Some sites utilize only local growers, so the nutritional value and freshness is of high quality.

posted 21 June 2005 16:59               

If you have a checking account go to the bank and request overdraft protection. This way if you mess up (many Lymies have some problems with numbers) you will avoid all those fees from the bank and whoever you wrote the check to if it bounced. This applies to debit cards as well.

Also call your credit card companies and ask that charges which will put you over your limit (authorization requests) be denied. There may be a term for this that I have forgotten. Otherwise the company may let your charge go through and then stick you with a $35 or so fee.

Also take advantage of coupons and rebate offers. Drug stores such as Walgreens have a monthly rebate flyer which often includes such items as free toothpaste, shampoo etc.
You end up getting these items for the price of a stamp.

posted 24 June 2005 01:59            

Epsom's Salt = Magnesium sulfate

Mag. citrate in a bottle = $1.99 or less
For those with kidney problems, the limonene in it can and will be problematic.(Lemon flavored bottle).

The cherry flavored form I haven't tried.

both types of bottles of the above cheap sources of Mag. are sweatened with saccharin(bladder-->cancer hazard(?)). the sacchr. just may kill the Bb. 'who the hell knows...whatever'