Finding Funds: Government Sources
Finding Funds: Private Sources
Help with Health Care and Equipment Costs
Organizing Financial Information and Making Decisions
ALS, with all of the equipment, medications, monitoring and daily support required, is expensive. It can easily deplete even a comfortable family’s resources. Financial worries often are a major stressor for family caregivers.
During the years in which ALS determines a family’s way of life, financial decisions take on new priorities. ALS adds the following to the normal family budget:
Early in the disease, evaluate family income and expenses and project ahead five, then 10 years. Take into account that the person with ALS will likely have to stop working — it’s difficult to project when, as each timetable is individual. Often, the primary caregiver gives up his or her job soon after to devote full time to the caregiving role.
This chapter lists a variety of financial options. Many of them take a lot of research and questioning to understand; consider enlisting someone in your family or circle of volunteers (see Chapter 8) to help with this homework. Or, an elder law attorney or benefits counselor (see below) could clarify your position with regard to financial resources. At any rate, the more information available, the better prepared a family is to make decisions and seek out financial programs at the most beneficial times.
There are so many benefits, both financial and assistance-oriented, to which individuals are entitled. These include community-based programs, state or federal assistance programs, as well as retirement and insurance programs.
One of the issues with having so many benefits available is that it’s difficult to track them and find out which ones are appropriate for the situation. This is where a benefits counselor can help. The term “benefits counselor” can be applied to either a paid staff person for an agency or a trained volunteer. In simple terms, a benefits counselor is someone who reviews existing information about your financial situation and makes suggestions about benefits for which someone may be eligible, or managing existing benefits.
Who are benefits counselors?
Generally, benefits counselors work with individuals age 60 and older. If someone has a disability, they also are entitled to receive benefits counseling information. Many work with or volunteer for agencies like the Area Agencies on Aging (AAA). With the AAA, there are stringent criteria for benefits counselors and certification levels are available. The various certification levels designate the types of cases for which someone can receive assistance.
Individuals receive free assistance from a benefits counselor. It is not attorney representation, however. Individuals who need legal representation still may receive a benefits counselor; however, the counselor will not be able to represent them in court.
How can they help?
It can be confusing to figure out eligibility requirements, how to apply, what types of documentation are needed and many other issues that arise when looking at benefit programs. Throw in supplemental insurance policies, and you have a recipe for confusion.
Trained benefits counselors can sort through the “confusion” to help develop a cohesive benefits plan. The benefits counselor serves a valuable role in discovering possible avenues for benefits that give families alternatives that may not have been known before.
The types of information that benefits counselors can examine include (but may not be limited to): insurance benefits; Social Security benefits; Social Security Disability benefits; Medicare (including the new prescription benefit section, Part D); prescription assistance programs (for individuals not eligible for Medicare); income tax benefits and credits; retirement benefits; veterans benefits; community- based benefits; state program benefits, including home care alternatives; advocacy with agencies, if needed; and referrals to community-based organizations or government agencies.
Make sure you have documentation available when you speak to a benefits counselor. Things to consider taking with you include: recent statements from your insurance company; recent bank account statements; medications you are currently taking (for Medicare Rx or other prescription benefit programs); retirement statements concerning benefits you are already receiving; Social Security statements and card (if available); disability benefits currently receiving; and any other state, federal or community program where you are currently enrolled.
What if you’ve applied for services and have been denied, yet you still feel that you qualify? A benefits counselor can examine your case individually and try to advocate on your behalf. Advocacy does not guarantee services, however.
Advocates may be able to sort through the requirements and find out if there has been miscommunication, missing documentation, or other communication barriers that prevent you from receiving specific benefits. If you still are denied benefits, at least you will feel like you have received the total attention of the “system.”
Where do they work?
You can search for a certified benefits counselor through local Area Agencies on Aging (AAAs). Other organizations include your local human service offices, county welfare offices, and community-based organizations that serve the elderly and/or disabled.
Another method to find a benefits counselor is by calling an Information and Referral helpline. In more than 46 percent of the United States, you can dial 2-1-1 and reach a trained professional who can identify organizations in your community where benefits counselors work. If your area does not have access to 2-1-1, usually there is one point of entry into the human service system. Some places call it a helpline, while others call it information and referral. To find out if your community has access to 2-1-1, you can look online at 211.org. The nationwide status map also can give insight into where to call if your area is not served by 2-1-1.
Learning about available benefits can be challenging. It’s important to have a trained professional review your situation and point out avenues you may not have considered investigating.
(Excerpted with permission from Today’s Caregiver.)
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