Moment of Truth
Typically when our loved one is in their teens or early 20s, they will reach their "moment of truth." This sounds like a bit of hyperbole, but it's not.
The Moment of Truth occurs just before they begin their first job. You must consider how living costs and medical insurance will be provided for your self-advocate for their life! You basically have two choices but most families are unaware of this fork in the road. You must forecast if your loved one will earn enough income themselves or through family support for their lifetime. As one can imagine, this is a huge dollar amount, further underscored by the extended lifespan of people with Down syndrome.
You may WISH for them to be self-sufficient. You may be opposed to people taking government support. You may certainly be celebrating your self-advocate's drive and success as they secure their first job. But to expect they will be self-sufficient throughout their entire life is often overly optimistic. Consider the costs ahead, including housing, day programs, transportation, medical expenses, hobbies, travel, and other general living expenses.
Why is this important? If you believe in this lifelong self-sufficiency, you need not worry about government benefits like SSI, Medicaid, Waiver programs, and more. But if you honestly don't expect them to make enough year-in and year-out to cover all their expected and unforeseen costs, you need to ensure you secure and maintain all the government benefits due them...and this can be complicated, confusing, and overwhelming.
Understanding the World of Benefits
Every parent with a child or adult with intellectual disabilities knows how challenging it is to find all the benefits due your loved one. No one hands you a list of all those benefits, not to mention when you can apply and how to do so (until now...that is why we published our book, The Essential Guide). We all dig around on the internet, learn from fellow parents, and our local Down syndrome associations, and we hope we've done our best. Once we've taken care of what we know of, we sit back, duly proud of our efforts. We know independence is not cheap so all these resources matter.
Maintaining Benefits
But WAIT! Did you know as hard as it is to secure all the eligible benefits, it is quite easy to unknowingly lose those same benefits? Here are 10 ways you may lose your valuable benefits:
Earn too much income (generally $1900 /month): even if you direct benefits to your ABLE account, if your son or daughter earns too much income, the government believes you can be self-sufficient now and into the future, so they will pull your SSI eligibility.
Receive gifts like bonds or estate money from someone’s will: if your son or daughter has stocks or bonds in their name, it will count toward their asset levels. Be sure to advise relatives not to purchase such bonds but instead direct any sizable gifts to their Special Needs Trust.
Work too many hours, get paid bi-weekly, or receive holiday bonuses: traditionally, earning too much at work to lose benefits was rare. However today, more people with Down syndrome are working and getting paid the state's minimum wage or higher (as opposed to a subwage). More are working more hours or multiple jobs. All this contributes to the risk of too much income. You should also consider that if your loved one gets paid every 2 weeks as opposed to twice a month, this too could jeopardize their benefits because they will receive 3 paychecks some months. Finally, be conscious of holiday bonuses which can tilt the scales.
Have assets of more than $2K: if you have assets greater than $2,000, you may lose your benefits. ABLE accounts and Special Needs Trust can mitigate these risks, but you need to look into them and set them up early - certainly before your self-advocate starts to work. Be aware of gifts as noted in (2) from relatives or from yourself through your Will.
Have credit cards in their name: credit card limits are often considered as assets, even if they are not used because they could be used like money. Steer away from credit cards and consider getting your loved one a debit card instead. These don't impact their asset level and still provide a measure of independence and money management that can prove a great training ground.
Avoid paying their own rent at home: like any adult, your self-advocate should pay their own rent. Not only is this a measure of independence, but it can also enable them to get full SSI. Often, people receiving SSI only get about 2/3 of their total eligibility because they don't pay for rent. This can be remedied. Write up a simple one-page contract with your loved one agreeing they will pay $X (a reasonable and defensible market rate) every month. You need to utilize their ABLE account for this step. You can deposit the amount of their rent into their ABLE account from your parental bank accounts and then set up a monthly automatic payment from the ABLE account back to you for rent. This provides the documentation of their rent payment. It may sound odd, but this is a viable, common practice. Then submit documentation to Social Security and file for your loved one to receive full Social Security.
Receive child support in the case of divorce: if/when parents get divorced, child support payments are often part of the settlement. However, if those benefits are earmarked for your child or go into their account, they will count as assets against their SSI limit. Talk to a special needs lawyer to set up a trust (different from the typical SNT) to facilitate this support.
Get married: if people with intellectual disabilities get married (whether to another with special needs or not), the government will consider the income and assets of both partners and often this will disqualify them from some or all of their SSI benefits. Check this out further before they take the leap.
Move out of state: this can be especially frustrating because all states offer many of the same benefits, but they may manage them differently. Hence, there's not a federally-managed program, especially for Medicaid Waiver programs that can provide significant financial benefits to cover respite care, therapy, day programs, and housing costs. So if your child moves out of state, they will have to apply for the new state's waiver program and typically wait in a new line. What's even more frustrating is IF they return to their previous state (perhaps their parents were transferred for a short-term work assignment), they will have to start over again in the original state, regardless of how long they used to live there, their previous spot in line, or the duration of time they had moved out of state for whatever reason. Before you move, be sure to at least consider this exposure.
Never apply for benefits in the first place: this is surprisingly, yet understandably, common. Understanding what benefits are due is not obvious. Most do apply for SSI at age 18 because it is the most commonly known benefit. But what about SNAP (today's Food Stamps program) or HIPP (medical premium reimbursement program)? Both are available in every state. Often, even if you were not aware of these it is not too late to apply today.
What exacerbates the issue even further is the connection, especially with other Social Security benefits:
Medicaid: If your self-advocate loses eligibility for SSI, they also lose their Medicaid! We all know how much medical insurance costs these days and that will only increase as they get older.
RSDI: I only discovered for our family the link between our daughter's SSI and RSDI somewhat recently. RSDI are the Social Security benefits due us, the parents, if we are (1) disabled or when we (2) retire and start collecting our own Social Security, and finally when we (3) die. In all three cases, typically your son or daughter with Down syndrome will be eligible to receive Social Security from these 3 events. They must maintain their link to the parent's Social Security by remaining eligible for their own SSI (see our list above). If they do, their SSI will be suspended in lieu of receiving the greater RSDI portion. The fact they receive this larger benefit in the case of a parent's disability, retirement take, or death does not reduce the benefits provided to the parent and spouse. Considering that our loved ones may be relatively young when the parents start receiving RSDI and since the lifespan for adults with Down syndrome has doubled from 27 in the mid-80s to over 60 today, these proceeds can be HUGE (hundreds of thousands of dollars or more). Be aware of these as you plan the future and ensure that your loved one's connection to your Social Security is preserved.
Fortunately, each of these risks can be avoided by being aware of the rules and utilizing various instruments to protect income and assets.
For more information on these topics and more, check out our free blogs, YouTube videos, and resources, as well as The Essential Guide for Families with Down Syndrome on our website:
While I am not a certified financial advisor, two experts did provide significant support for The Essential Guide. I would also suggest you contact a financial advisor with expertise in special needs instruments so your particular family situation is best managed.
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
GET YOUR COPY HERE!
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
Get the latest on The Essential Guide, speaking engagements, and our weekly blog articles and resources when you subscribe to our free website.
Sometimes this blog may get hidden amongst your Facebook posts or buried inside a Facebook Group. Don't miss any blogs filled with steps to help us all advocate for our adults with Down syndrome. Subscribe today!*
Get your
FREE
Letter of Intent Template
when you subscribe.
This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.
Get your free template today and give yourself the peace of mind you deserve.