Adult Disabled Child Benefit

Social Security offers special benefits for those who were found to be disabled (meeting Social Security’s definition)  before the age of 22. In certain circumstances the child – which could mean adopted child, stepchild, grandchild or even step grandchild – may be eligible to be paid on a parent’s (grandparent’s) Social Security earnings record. In my experience the easiest way to prove this is applying for SSI when the child turns 18, IF the child has a significant disability limiting his/her ability to work. I will ALWAYS encourage individuals to work if they are able, because it ultimately provides much more freedom (my opinion).

These benefits are paid on the parent’s earnings, so it is not required for your child to have earned any credits. There is a catch – the child cannot have “substantial earnings” – in 2018 this means they cannot be working and earning more than $1,180/mth. As with any program, there are exceptions; but rather than try to explain them please check out Social Security’s pamphlet on “Working While Disabled“. Another caveat – if the individual marries he/she may lose their benefits; again, there are exceptions and the best source is going to be the Social Security Administration.

A frequent question I get is “will my child’s payout affect the amount I receive?” Short answer – no, generally not. However, Social Security does have a family maximum payout, which is usually between 150 – 188% of the worker’s basic Social Security benefit. The formula is complex, and if you’re interested here is a link to a Social Security Bulletin explaining it (Vol 75 No 3). What I would like you to take away is this – in MOST cases there should not be an issue; but if you have any doubts or concerns the Social Security Administration, or an attorney specializing in disability benefits, is your best resource.

Another benefit to someone receiving adult disabled child benefits, if they were previously approved for SSI – they become eligible for Medicare after they’ve received the adult child social security benefit for (2) years. This is another complicated area, and best left to a discussion with a professional – but it’s important to know the option exists. Here is a link to Social Security’s overview of Medicare.

I didn’t do as deep a dive as I normally try to, because there is so much complexity with Social Security, Medicaid and Medicare. I do not want anyone to rely solely on something I’ve written to decide if they should apply or not; or what benefits they are eligible for. The options I advocate for are (1) talk to an attorney specializing in disability law and/or (2) contact your local social security administration office.


Supplemental Security Income (SSI)

I’m hoping to bring some clarity to what SSI is, and isn’t, for families with disabilities. It’s not a magic bullet, it doesn’t pay for everything. But for those with little to no other resources, or the ability to earn a sustainable wage, it can be a life line. It’s also NOT money provided by our Social Security taxes – it’s paid by general tax revenues.

In Maryland, and many other states, eligibility for SSI automatically grants Medicaid to the beneficiary. If you’re not sure if you’re state does, Elizabeth Dickey’s article provides a great breakdown (Disability Secrets). The financial benefit is $750/mth (single) and $1,125/mth if individual has a qualified spouse. It’s meant to pay for food and lodging, and there are limits to how much you can earn, and how much you can maintain in assets.

2018’s earning limits = $17,040; and SSI payments will be phased out as you reach this limit. There are programs to enable individuals to work while still collecting SSI. Rather than trying to explain it all here, please follow this link (SSI and Work). My personal bias – if you, or your family member, can work – they should. Paying into the system allows them to start earning credits towards retirement; among many other benefits.

If you have a child who you think will qualify for SSI – apply as soon as possible. Until the child is 18, determination will be made based upon your household’s income and assets. As soon as they turn 18 this changes to the individual’s income and assets; so apply on their 18th birthday. You’re going to need to be able to prove the disability, and the individual’s inability to perform any gainful employment – so keep ALL  your documents. I used Google Drive, as well as keeping hard copies.

I also hired a disability attorney. I met mine through networking, but looking online led me to the American Bar Association’s lawyer finder. I can’t attest to how easy it is to use, and my preference remains getting a referral from someone who has already been through the process successfully. You’re going to want to keep all your original documents; and be patient – the process can take several months.

Next week I’ll take a deeper dive into the additional benefits your child becomes eligible for if they are approved for SSI before the age of 22. I’ll also explore things to consider when planning – but this is a broad sweep. I can’t take into consideration individual’s circumstances. Bottom line, SSI is a critical tool for those who need it – but in my opinion it shouldn’t be viewed as the best, or only, go to.



Trusts Are NOT Plans

All too often I will have someone tell me they have a “plan”, because they’ve gotten the their Special Needs Trust. Setting aside, for the moment, my concerns their Special Needs Trust will work as they want it to, this is NOT a plan for the future.

All too often I will have someone tell me they have a “plan”, because they’ve gotten the their Special Needs Trust. Setting aside, for the moment, my concerns their Special Needs Trust will work as they want it to, this is NOT a plan for the future. It is a tool to be used in the implementation of their plan. A 3rd Party Special Needs Trust, or Supplementary Needs Trust, is an approved vehicle for individuals with disabilities to accumulate money without risking their Supplemental Security Income (SSI) or Medicaid benefits.

If you have a Trust, you should also be clear on how you are going to fund it – life insurance, investments, etc – taking into account what other resources may be available (SNAP, SSI, etc). This is where working with a Planner helps – they bring an impartial point of view and, provided they are familiar with Special Needs, may be able to introduce you to resources you may not have considered or knew about.

The CFP (Certified Financial Planner) Board has outlined (6) financial planning subject areas; and although not all-inclusive they should give you an idea of what a plan consists of. These areas are (para-phrased, follow link above to get full breakdown): Cash flow/budgeting; risk management (insurance – homeowners, life, etc); employee benefits; investments; income taxes; retirement and estate planning.

Trusts fall into estate planning, and even then this isn’t the only thing to consider when developing an estate plan. This isn’t meant to imply a financial planner will do everything in this list themselves; more than likely they will have a team of experts they work with/refer to. This is how I work, I recognize my limitations and rely on the knowledge of those who have dedicated their careers to a particular field of study – like income tax or estate planning.

There are other types of Trusts, including a 1st Party Self-Settled Special Needs Trust – if you want more information/details about what makes Special Needs Trusts a “safe” place to save money, or if you should have a Trust, or anything in a similar vein – then find a Special Needs Planning Attorney. I am NOT an attorney and this is not an area I will give advice. The two sources I use are the Special Needs Alliance and the Academy of Special Needs Planners.

As I’ve said before – you don’t have to work with a financial planner, or any other professional. There are plenty of resources (good and bad) available if you want to do everything yourself. The value, in my opinion, of working with any professional is two-fold. First, this is what they do all day, every day – they should know it inside and out. Second, they have the benefit of not being emotionally invested, meaning they can provide an objective point of view, even if it’s not what you want to hear. If you’re interested in a Special Needs plan, or you just have questions – schedule a call with me; it won’t cost you anything.


Independence Through Technology

Technology is really leveling the playing field – and it’s exciting to consider the possibilities. Some of the more obvious (to me) are home delivery of groceries and restaurant meals; ride-share apps; and the large number of apps tablets (iPad, Samsung, etc) provide access to.

But let’s take it a step further – with the advent of “smart homes” individuals can potentially gain almost complete independence; to the point where if they need an aide the aide could be more in the background, making sure everything is moving smoothly. Families could set up a refrigerator with the grocery list, and when items need to be replenished the fridge could automatically order – followed by a delivery from a local grocery store. You could even use an app like Task Rabbit to hire someone to help put the groceries away.

Theoretically, a phone/tablet could be programmed to run anything in your home – just imagine. Concerned about elopement, you could control the locks – reducing the risk, and receiving an immediate alert when/if somebody enters/leaves. You can even get real-time video, eliminating any uncertainty about what is happening.

I don’t remember the last time I stepped foot into a bank; and, depending on the State, an ABLE account could provide the same capability. There are current limits on how much can be contributed and saved; but it’s a start. Money could be deposited into the ABLE account; and, through the use of a debit card, individuals could make online purchases through a retailer (with care being taken to ensure they meet the guidelines of “qualified expenses”).

Of course there are drawbacks – it’s no different than anything else. And, some of the technology may be too expensive; so it’s out of reach – right now. One thing I can say for certain, based upon past experience, is as technology becomes more mainstream costs will come down. You don’t need to be an early adopter; let someone else work the bugs out and you can reap the benefits later. But allow yourself to dream, imagine the possibilities. I feel too often we, as parents, get caught up in the now – head down, pushing forward; and don’t allow ourselves to stop, put our heads above the treeline and look around. See what’s available – even if it’s in the future.

Those things in the future – those are our hopes. Will everything work as advertised, or be the 100% solution. Probably not. But isn’t a 50% – 75% solution still better than where you are now? Don’t just allow yourself to hope, give yourself permission to take some time – even if it’s only once/month – to spend an hour or two exploring the app store; or listen to what others are saying. Often this is where I get clued into tech advances. And then, instead of dismissing it out of hand (I think if we’re honest we all do this more than we’d like); pick one or two things to try. And don’t just try it once, give it time to allow yourself to become comfortable with the technology. Then, if it’s not for you – get rid of it, and try again.


Protect Your Adult Children

There is a movement in place to encourage supported decision making, of which I’m a HUGE fan – despite my having recently petitioning for (and being granted) guardianship of my son. However, I’m concerned not enough is being done to safeguard their well-being – specifically ensuring they have things like a basic estate plan, property and casualty insurance, etc.

Why am I concerned? Because in every study I’ve read, more than 50% of Americans (not Americans with disabilities) do not have an estate plan. Here’s one article from AARP, showing just how rampant this problem is. No, not everyone will need a Special Needs Trust; but everyone (in my professional opinion) should have a basic estate plan – consisting of (at a minimum): a Will, Durable Power of Attorney (DPOA) & Health Care Proxy. This covers the big (3) – estate, property and person.

Let them decide who to leave their treasures to (Will). The DPOA doesn’t have to be broad, it can be narrowed to just specific financial decisions (like buying/selling property). And the Health Care Proxy is what will allow you (or whoever the individual chooses) to make health care decisions in the event the individual is unable to (unconscious, unable to speak/write, etc). These are basic requirements I encourage EVERYONE to have in place – with or without a disability.

Last on the list – property and casualty insurance. I think this is most often overlooked, although I cannot prove it. But I don’t know of any agencies requiring the people they serve in a Residential capacity to purchase a Renter’s insurance policy. I doubt families think of it, they often have too much else going on; and frankly it’s not something we as a society talk about.

Just about everyone owns something that is important to them. With technology becoming less expensive and providing those with disabilities so much more freedom; it’s less and less uncommon to see young adults without at least a smart phone or tablet. These cost money, often in excess of $200 or more. When you’re living off just Supplemental Security Income ($735/mth), and limited to $2k in assets; there is not a lot of room in your budget to replace anything if the home you’re living in has a busted pipe or your item(s) are stolen.

Even without these limitations, how many of us can honestly say we can replace high ticket items from savings without a second thought? Renter’s insurance policies are usually not very expensive, especially when weighed against the benefit they provide. Landlords are not required to replace items, nor are organizations providing Residential support – be it an Arc or a Nursing Home.

So if you have a child, or relative, over the age of 18 whom you’re helping ask yourself if they have these basic protections in place. Do you? If the answer to either question is “no”, fix it. Although I’m not a huge fan of online legal advice, if you’re constrained by budget using a website like NOLO or legalzoom may be pretty useful. Buyer beware, these sites may not necessarily have the most current forms as required by law, so at least have whatever you do reviewed by an attorney.

Partnership for Extraordinary Minds

Welcome 2018 – I’m starting the year recognizing a small, local non-profit which has been a HUGE help to families, mine included, through outreach and information sharing. Partnership for Extraordinary Minds (xMinds) was founded in 2009 by parents, and focuses solely on improving educational experiences and outcomes for students on the Autism Spectrum.

Who They Are 

xMinds’ Mission is simply stated: “To improve the educational experiences and outcomes of students on the autism spectrum in Montgomery County, MD.” They do this by providing a wide range of resources; including (but not limited to): peer networking; self-advocates sharing their stories; encouraging self-advocacy; and supporting educators.

What They Do 

xMinds is all about advocacy, specifically advocating for: knowledge & understanding, Montgomery County Public Schools (MCPS) staff training (from bus drivers to teachers), continuum of placements and educating parents.

They do this through speaker events – they actively seek out professionals and successful self-advocates to come and talk to parents. Although there is a fee for nonmembers, it’s typically not too expensive (~$15) and in my experience the events are more than worth it! They also hold an annual forum with MCPS, this year’s will be their 10th anniversary (10 April 2018, 6:30 pm).


What Else Should I Know

xMinds‘ website is a GREAT resource for families new to Autism or well along on their journey. They offer links to information about Autism, IEPs, MCPS and a host of other resources. I encourage anyone who has a child on the Spectrum, whether you live in Montgomery County, MD or not; to visit their website and sign up for their newsletter – you won’t be disappointed.


I am not an employee of Partnership for Extraordinary Minds and any errors noted are my own.  If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.


Yesterday I went to Court and was awarded Guardianship of my son. This is something I’ve been at war with myself about since my wife passed, and even now I feel unsettled about having gone through with it.

I’m clear in my heart and mind about doing what’s best for him, but I’m less clear on my “right” to make this decision – just because I’m his parent. If we were to be completely honest, I think most – if not all – parents of teenagers would admit they have no clue what their son(s) or daughter(s) are doing when they (the parents) aren’t around. Sure, they trust them to do what’s right; but they can’t stop them from making poor decisions – it’s part of the process of becoming an adult.

As much as I wish otherwise, my son wouldn’t learn from similar poor decisions – his cognitive ability (as tested by 3rd parties) isn’t up to the task. So I need to put safeguards in place to protect him. As an added “bonus”, these safeguards will make it easier to keep him on my health insurance, survivor benefit plan and VA benefits. All great things – I agree.

So what is my issue with Guardianship? It seemed almost too easy. Yes, I hired an attorney who knew what he was doing, and I really appreciate the way he debated my points about Guardianship rather than trying to force it down my throat. And yes, my son was appointed an attorney, by the courts, who came out and made her own assessment. So I don’t mean easy like checking a box and it was done.

But where were the discussions about what it means to become a Ward of the State (if I hadn’t brought them up)? I’m my son’s Court appointed Guardian, but he is ultimately now a Ward of the State – when I’m gone the Court’s have the right, and responsibility, to appoint a new Guardian. Unless my son can prove he is no longer incapacitated.

Guardians can allow their charges to vote, and have every other civil liberty we are all entitled to – but they don’t have to. And this is the crux of the issue, at least for me. In my son’s case, supported decision making wasn’t an option; at least not right now. But it could be for so many others, and I’m concerned it’s not getting enough publicity. And I’m also concerned parents, who don’t know any better, are being pressured to apply for Guardianship because it’s the tool that everyone knows.

My hope is more people will share what supported decision making is, and be willing to partake as a team member. Think of the people you rely on when faced with challenges, doesn’t make you any less of a person. In fact, it could be argued you are who you are because of those around you – so why shouldn’t individuals who happen to have disabilities have the same opportunities? Guardianship shouldn’t go away, in some cases (like mine) it really is the best answer. But it’s not the only answer.