THE TIN MAN GUIDE TO STIFF-PERSON SYNDROME
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Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org. Thetinman.org is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.

In addition to organizing your information, you need to organize your finances. See the Risk of Abuse section for information on financial fraud and how to prevent it.


It is a good idea to set up e-mail and/or text notifications for activity on all bank accounts and credit cards. Always look at a credit card statement and make sure the charges are legitimately yours.


The tools provided for managing finances can easily be turned into spreadsheets on your preferred software. If you utilize a program such as Quicken, you can generate reports to help you analyze your financial status.


If computing is difficult for you, use printable documents to keep track of your finances and budget. If writing by hand is difficult due to spasms, buy large pencils or pens with large, cushioned grips. Try gripping the pen between your index and middle finger and wrapping your thumb around the bottom of the pen for stabilization. Find the type of pen that makes it easier for you to write:  gel, ball-point, fine point, medium point.


The first task is to examine your overall financial status: how much you bring in, how much you spend, and what you spend it on. This will help you figure out where you can cut spending if your income is reduced.


TWO-YEAR EXPENDITURE HISTORY (FORM)


Using your check register and credit card history reports, this tool helps you assess how you are currently spending your earnings.


BANK ACCOUNT REGISTER (FORM)


CHARGE CARD REGISTER (FORM)


MONTHLY BUDGET (FORM)


Once you know where you spend money, you can develop a monthly budget for necessary expenditures.


Having taken stock of your current financial picture, it is time to evaluate what type of help you need and what type of help is available to you.


If you are still employed, your employer may have offered you short-term disability insurance and/or long-term disability insurance. You can also purchase these benefits for yourself. Most major insurance companies offer plans. Do a careful comparison of cost and benefits before choosing one. And do a cost/benefit ratio to decide if you need it. Depending on your wage level, it might be better to put money in a special savings account that earns interest over time.


Short-term disability insurance pays for a few days or weeks off for things like surgery or an injury while on the job.   It reimburses you for a percentage of your normal (non-overtime) wages (between 50 - 70%). The coverage can last for ten to twenty-six weeks. There will be a cut off after a maximum amount is reached. There is usually a waiting period (2 weeks) before benefits start. You must meet their criteria, usually with input from a doctor (sometimes their doctors) to collect.


Long-term disability insurance pays for long-term loss of work due to illness, injury, or accident. It reimburses you for a percentage (between 50 - 75%) of your normal (non-overtime) wages.  Long-term disability takes over when short-term disability insurance ends. The coverage pays for a specific number of years (two to five) and cuts off at age sixty-five when Medicare kicks in. You must meet their criteria, usually with input from a doctor (sometimes their doctors) to collect.


http://www.marketwatch.com/story/how-to-pick-a-disability-insurance-plan-2012-05-14


Long-term disability is not the same as worker’s compensation which pays for injuries as a direct result of your employment.


States require employers to have workers' compensation insurance, though there are a few exemptions. Worker’s Comp reimburses you for a percentage of lost lost wages (up to 75%) and related medical bills. You must notify your employer. If your injury is a result of a work injury, your regular insurance will not pay. This question is usually asked at the time of examination or doctor’s appointment. Your employer should supply you with the forms needed to file a claim. If not, contact your state Workers' Compensation Office. Stiff-person syndrome is not a work-related injury, but a work related injury could make your overall condition worse.


http://www.dol.gov/owcp/dfec/regs/compliance/wc.htm


www.workerscompensationinsurance.com


Social Security disability is a wage replacement plan for people who have worked and paid into the system through taxes. You must meet their requirements. The application takes 60 - 90 days. There is a six-month waiting period. You must have worked for at least one year before filing. That means if you have not worked for over one year, you will not qualify. If you have been a stay at home parent, you will not qualify.


SSDI also provides benefits to family members when a primary wage earner in the family becomes disabled or dies. SSDI benefits are payable to widows, widowers, and children or adults disabled since childhood who are otherwise eligible.


Social Security Disability Resource Center


Stiff-person syndrome falls under the Compassionate Allowances program.


Guidelines for SSDI and Stiff Person Syndrome


http://www.socialsecurity.gov/compassionateallowances/


http://www.disabilitysecrets.com/resources/social-security-disability/social-security-disability-co-1.


Supplemental Security Income (SSI) is a federal program that makes monthly payments to people who have limited income and resources if they are 65 or older or if they are blind or have another disability. You receive a monthly benefit and, depending on the state where you live, they offer benefits and services such as food stamps, housing allowance, and health care.


A Desktop Guide to Social Security Income

Disability.gov Guide to financial help for low income individualsnancial-help-for-low-income-families-individuals/  

Visit your state benefit service office to see if they have a catastrophic illness fund for hospitals, doctors, and medicines for incapacitated persons suffering financial hardship. There are catastrophic health insurance plans designed to provide an emergency safety net to protect you against unexpected medical costs.


http://www.ehealthinsurance.com/health-plans/catastrophic-insurance/


Long-term health insurance kicks in when you can no longer perform three out five activities of daily living.


https://www.ltcfeds.com/


http://www.forbes.com/sites/howardgleckman/2012/06/28/10-questions-to-ask-before-buying-long-term-care-insurance/


http://en.wikipedia.org/wiki/Long-term_care_insurance


Other forms of assistance include:


National Association of Financial Advisors is the country’s leading professional association of fee-only financial advisors.


Need Help Paying Bills is an organization that helps you find sources of income assistance for disabilities.


Office of the Assistant Secretary for Planning and Evaluation helps develop comprehensive family-based money and credit strategies.


Modest Needs is an organization that provides short-term financial assistance to individuals and families in temporary crisis who, because they are working and live just above the poverty level, and are ineligible for most types of conventional social assistance. Modest Needs Foundation meets the twenty standards for charity accountability according to the Better Business Bureau.


HRSA is a resource to help you find a federally-funded health center.


Crowd funding or crowd sourcing is a way to solicit donations to help you meet extraordinary medical expenses. To start a fundraiser, tell your story and explain why you need help (a video, blog, or social media page is needed). Specify your fundraising goal and deadline. Use social media such as Facebook and Twitter, to get the word out about your fundraiser. Encourage friends, family, and coworkers to donate and share your campaign. As your fundraiser progresses, provide updates and post videos to thank existing donors and encourage new ones.


Fundraiser Guide


Give Forward


IndieGoGo


If total disability is not an issue, but you have trouble maintaining your current job, there are many resources for education, training, and job location for people with physical limitations.


Heath Resource Center is a collaborative effort among a network of professionals in the areas of disability, counseling, transition and postsecondary education.


Education Resources Information Center (ERIC) Online educational programs.


National Center on Accessible Information Technology in Education (AccessIT).


Full Life offers vocational training for people with disabilities.


APSE:  The Network on Employment offers integrated employment opportunities, services, and outcomes for persons experiencing disabilities.


Career OneStop has information about career services for workers and employers, laid-off worker assistance, job bank databases, resume help, and the location of One-Stop Career Centers.


Disabled Businesspersons Assocation (DBA) has the in-house first hand expertise to provide information, counseling, coaching and mentorship from the perspective of someone with a disability in today’s highly competitive business world.


Job Accommodation Network (JAN) is a free consulting service to increase the employability of people with disabilities.


National Telecommuting Institute (NTI) is an educational/job-matching organization pioneering the development of telework jobs for Americans with disabilities.


If you should require admission to a nursing home, it is important to understand your rights and the financial implications.


http://www.aplaceformom.com/senior-care-resources/articles/assisted-living-residence-checklist


http://www.medicare.gov/nursinghomecompare/search.html


http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/FSQRS.html


http://www.ltcombudsman.org/issues/residents-rights


http://www.aplaceformom.com/senior-care-resources/articles/senior-care-costs


http://www.payingforseniorcare.com/longtermcare/paying-for-nursing-homes.html


Reverse Mortgages allow you to utilize the equity you have built up in your home to finance your expenses.


Reverse Mortgages


HUD Housing


AARP reverse mortgages

FINANCIAL AID

Living with SPS  Self Care   Grooming   Dressing   Bedroom Safety   Housebound/Bedridden   

Kitchen,Cooking & Groceries  Home Care  Hiring a Service   In-Home Care   Exercise   Mobility   Driving

Managing Medications  SPS & Pregnancy   Organizing Information   Financial Aid   Legal Aid   Mental Health

Anxiety & Depression   Suicide Prevention   Relationship Health   Risk of Abuse   Venting   Caregiving

Emergency Care   Anesthesia


Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org.