A daily occurrence for many of us is simply advocating for ourselves—sticking up for and defending ourselves and making sure we don’t get pushed around by agencies, entities, and government guidelines. As if advocating for ourselves isn’t exhausting enough, the process recycles itself in various forms—galvanizing us to repeat the pattern.
Advocating for yourself can mean spending hours on the phone, keeping tedious records and receipts, developing persuasive letter-writing skills, circulating those letters to a big, powerful CC list, and then following up on everything—not to mention the whole learning curve that often comes with dealing with each individual case. This can be draining and overwhelming for ‘spoonies’—the ones who cope with chronic illnesses and find themselves in situations that require self-advocating the most. Spoonies have the least energy for self-advocating and may need help and special time set aside just for self-advocating.
Over a year into COVID and as part of the Building Back Better Agenda, SNAP (Supplemental Nutrition Assistance Program) benefits will soon see a permanent increase for millions of families. In addition, disabled community members can now actually save money with an ABLE account and possibly avoid falling below the poverty level. People on SSI (Social Security supplemental income) will possibly see an increase in their benefits, and low-income folks who pay for internet at home can qualify for a $50 voucher.
Federal and state guideline restrictions through benefit programs such as Social Security (SS) and SNAP follow strict limitations meant to ensure recipients’ income remains below the poverty level. The bipartisan Stephen Beck Jr., Achieving A Better Life Experience Act (ABLE Act), however, aimed to help change all that.
The bill’s namesake refers to Stephen Beck Jr., a disability and Down syndrome advocate who was instrumental in spearheading the ABLE Act. On December 3, 2014, the US House of Representatives passed the ABLE Act. Sadly, Beck passed away on December 8. On December 16, the US Senate passed the ABLE Act as part of the tax extenders bill. President Barack Obama signed the Tax Increase Prevention Act of 2014 on December 19 of that year.
Three years later, in December of 2017, the US House of Representatives passed the ABLE to Work Act and the ABLE Financial Planning Act. These two programs were introduced and subsequently passed as part of the Tax Cuts and Jobs Act which was signed into law by President Donald Trump on December 22, 2017. It went into effect on January 1, 2018. These laws allow the disabled person, referred to as “the beneficiary,” to save money through an ABLE program—similar to a regular savings account, without having it count against their income. Because the law calls for ABLE accounts to be set up through each state, it wasn’t long before state ABLE websites with individual state regulations began popping up.
An ABLE account is an excellent tool for those with disabilities, but it doesn’t come without an overabundance of rules and ever-changing information. For example, this first bill allowed only people born with disabilities to participate. Newer legislation would allow people who developed disabilities up to age 46 to participate. It can be overwhelming to learn just the basics. The first thing to know is the ABLE account is not held by a regular bank. It will be set up through a state website of your choice. You do not have to choose the state you live in. You can open your ABLE account in any state that has them available. It is also recommended to research them to find one that suits your needs. This comprehensive interactive United States map makes it easy to research state by state. If you later find a better state ABLE program, you can easily open a new account with a different state at any time.
For California’s state program, CalABLE, you’ll need just $25 to open your account. From there, you can connect your ABLE account to your regular bank account and even open a prepaid card to help you pay your bills. You can withdraw money from the ABLE account to transfer into whichever account you regularly pay your bills with, but you must spend the money from the ABLE account on approved expenses. These include housing and transportation expenses. It’s necessary to keep clear records of everything spent out of the ABLE account to ensure it is only spent on approved expenses.
ABLE accounts also allow recipients with SS income limits to save money with limits up to $100,000. Whereas, in the past, holding a savings account would disqualify a disabled person from SNAP benefits and affect their disability payments. Get updates on the ABLE account delivered to your inbox from the ABLE National Resource to keep up with any changes and updates to the program.
Some benefit workers who review income may not even be aware of the ever-changing ABLE laws, therefore you may be the one who needs to inform them. Your SNAP household allotment may have been reduced or prorated during the pandemic.
The American Rescue Plan 2021, also known as Stimulus 2021, was signed into law by President Joe Biden, and extended full family allotments to SNAP households through September 30, 2021. If your SNAP benefits were prorated before September 2021, you can appeal by filing with the California Department of Social Services Hearings Division.
Oftentimes, SNAP recipients are told they qualify for a certain amount, and it’s not usually questioned or contested by the recipients. If you are reading this past September 30, 2021, you can still appeal and advocate for your back-owed benefits that are due to you.
Filing appeals is part of self-advocating in this system of controlling guidelines. This complicated plethora of red tape coupled with human error may leave one with a complete denial letter. If you’re worried about the fallback to prorated household allotments, more help is still on the way through the Farm Bill of 2018. The law increases SNAP permanent allotments for 2022, putting those increases back on the horizon.
The SNAP guidelines for recipients call for limits and reductions on “income” including birthday gifts from family and money from recycling, which is considered self-employment in California. Recycling is considered “income” even if you paid the California redemption fee at the check-out stand and are, in reality, just getting your own already-earned money back. Be sure to deduct those California redemption fees from your saved grocery receipts (usually $0.90 per 12-pack of cans).
Advocating for benefits through the appeals process gives one a chance to write matter-of-fact accounts and include a powerful CC email list. The CC list could include, for example, your senators, your representative, your governor, the USDA Child and Adult Care Food Program, and your attorney, if you have one. If you don’t and you think you might need one, you can use a monthly service. One example of a monthly legal service is LegalShield, which starts at $25 per month and can be canceled any time without penalty. You can get letters written on your behalf, cease-and-desist orders sent out, procure legal issue advice as well as legal advice for advocating for yourself, and your will drafted or updated.
On December 27, 2020, the Consolidated Appropriations Act of 2021 was established to help make internet service during the pandemic more affordable to millions of Americans. You can apply for this stimulus on your monthly internet bill by visiting the Federal Communications Broadband Benefit application.
Folks who have been struggling on SSI may also see a new ray of sunshine. The SSI Restoration Act would increase SSI’s sub-poverty-level monthly benefits—currently at $794 per month—to 100% of the federal poverty level. This would mean a 31% increase and index to inflation. Most recipients would then receive closer to $1000 per month—a more realistic amount toward living expenses.
Advocating for yourself can take weeks, months, and the most patience you can muster. It means continually making phone calls and mastering persuasive writing and sometimes speaking skills. It can be exhausting, but over time, self-advocating can begin to feel like second nature.
For more information to aid you in your self-advocating, check out all of the additional resource links below.