Wednesday, June 29, 2011

Tools for Your Caregiving Tool Belt – Navigating Government Programs

We’ve added Education and Navigating Care Facilities & In Home Care to your caregiving tool belt (again, thanks to Denise Brown who gives many caregivers plenty of tools for their caregiving tool belt and is the kind soul behind – a wonderful online support community).

At some point in the caregiving experience, you will most likely need to step into a government office. Before doing so, take a deep breath (or a few) and throw all expectations of common sense out the window.

This is not said out of mean-spiritedness or because I am perpetuating stereotypes without basis. There are many, many helpful people who work at the various government agencies who I cannot blame for the difficulty in navigating these agencies. It is my personal experience that the policies and procedures are so convoluted that two people from the same agency, working in the same office may give you two different answers to the same question!

I’m not here to change the government (although it is on my to-do list) but will help you navigate through a few government agencies as painlessly as possible. (If you’d like to read an admittedly long, yet honest personal experience of dealing with a government agency, my first ever blog post details it here).

The reason contacting a government agency may be necessary is for help in covering the extraordinary expense of caregiving. Depending on personal circumstances, this may or may not be necessary and your loved one may not qualify but it is worth looking into. Caregiving is expensive!

Federal Benefits. Contact the local Social Security office (or, better yet, visit their website at to apply for Social Security benefits and to see if the disabled adult is eligible for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Be sure to make an appointment before visiting a Social Security office (the wait will be long enough even with an appointment!). If the disabled adult qualifies for SSI, this will help in qualifying for additional benefits at the State and Local levels.

Do not be discouraged if benefits are at first denied. Appeal, appeal, appeal! If necessary, hire an attorney who specializes in these types of benefits’ appeals.

Also helpful is the Administration on Aging website ( which is an additional resource with information about a variety of government programs and local agencies. This federal agency can link you to local agencies providing help for older adults and their families. Information and explanation of Medicare benefits can be found at

Extra Tip: While at the Social Security office, you may want to apply to become a Representative Payee. This is helpful if the person you are caring for is unable to take care of their financial matters themselves. It may not seem necessary at the beginning of the caregiving experience but this can eventually save a lot of time. Social Security does not recognize Durable Power of Attorney (which makes no sense to me) but as a Representative Payee you can handle the benefits for your loved one and make changes on behalf of your loved one without making them endure the experience along with you. This process takes a long time and it’s easier to get started if your caree can appoint you (in person, at the Social Security office). Better to do this sooner rather than later.

State Benefits. Once a person has qualified for Supplemental Security Income, they may automatically be eligible for Medicaid. Medicaid is administered by individual states but funded jointly through the Federal and State governments. It can be known under different names in different states (for instance, in California, it is known as “Medi-Cal”). The state department which manages health care services administers the Medicaid benefits. The website for the specific state department can be found by searching for “Medicaid” and the name of the state in which benefits are needed. (Calling the department handling the health and human services is also an option but will most likely take a lot of patience to wade through the automated calling system).

Once you have found the right department on the internet, searching for “services” on the website will yield numerous choices regarding types of services needed. This will also include information about programs (sometimes called “Waiver Programs” or “Consumer Directed Options”) including pilot programs (which are generally limited to certain counties). For instance, in certain counties in California there is an Assisted Living Waiver Program to assist with payment for services at an Assisted Living facility. This began as a pilot program in two counties and has now expanded to include several other counties. These programs have very specific eligibility requirements but can be extremely beneficial if a person is eligible. As an example, eligibility for the Assisted Living Waiver Pilot Program mandated a stay in a Skilled Nursing Facility prior to placement in the Assisted Living facility.

Some states also have a “Cash and Counseling” program which pays seniors directly and allows them to pay family members (or others) for providing in home services. Right now, Alabama, Arkansas, Florida, Illinois, Iowa, Kentucky, Michigan, Minnesota, New Jersey, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington and West Virginia offer this program.

Unfortunately, this is not yet available in all states and even in the states it is currently available, the benefit is under review (Florida, for example). Revisions may impact Medicaid long term benefits so when applying, ask as many questions as possible about this benefit and the impact it may have on other benefits. Contacting the local Medicaid office for the most up-to-date information is essential in these difficult financial times with state, federal and local budgets in a constant state of flux.

Local Benefits. In Home Support Services (IHSS) are administered on the County level. Contact the Community Services Agency of your county of residence. Services that can be provided through IHSS include personal care services, meal preparation, laundry and housekeeping as well as protective supervision for the mentally impaired. This program is designed as an alternative to Assisted Living or Skilled Nursing home care. Even though the funding is particularly tight at the local level, it may be possible to apply to be the provider of care for your loved one and get paid to do so (at least for a certain number of hours per week). Contact the Community Services Agency and ask what is required for you to do this. Each county will have different eligibility requirements.

Extra tip: Other local help can include home repair, assistance with utility payments and even legal services. In addition to using the Community Services Agency to inquire about these assistance programs, contact utility companies directly to inquire about low income or disability programs.

Don’t forget about the resources available through the Veteran’s Administration. Contact them through their website at or call the local office to see what benefits might be available for your loved one.

Government agencies aren’t the only resource available for you. Agency resources such as local Regional Centers are also a fantastic resource for the disabled. As with the previous suggestions, it is a tedious process to apply and become accepted but the resources available through these agencies can be a huge help to families. There are specific eligibility requirements so contact the local regional center in your area in order to see if your loved one qualifies.

Searching through the maze of agencies and figuring out the hoops to jump through is a daunting task but the reward will be getting much needed help for you, as a caregiver, and your loved one.

I’m a glutton for government agency horror stories so please share your experiences in the comment section. If you’ve found any useful tips in navigating these agencies, I would love to hear them too.

Next we will focus on relief: caregiver support!

1 comment:

Trish Hughes Kreis said...

Chris, It would definitely be nice if the government programs available to help the elderly and disabled weren't the first ones on the block to be axed during budget negotiations.