Featured Organization – ArtStream

ArtStream is a sleeping giant waiting to be awoken. This organization’s mission “to bring to adults with disabilities creative and performance opportunities that help them gain the confidence to engage with the world” doesn’t begin to touch upon the other amazing things they are involved in (which I will get into in much more detail below). If ArtStream only helped individuals with disabilities find their voice and self-confidence they’d be worth being involved with – but wait until you learn what else they do!

Who They Are

(Taken from their website) – “ArtStream is a consortium of professional artists who are passionate about bringing the arts to everyone.” They are always looking for new artists with a passion to bring the arts to others and help unlock and nourish their student’s creativity and self-expression.

What They Do

They have (4) inclusive theater companies – Arlington, Virginia; Gaithersburg, Maryland; Raleigh, North Carolina; and Silver Spring, Maryland. Each company is directed by a trained theater professional, and not only do they perform on stage – they create their own scripts. So EVERY performance is unique!!!! 

These are NOT a skit requiring a low level of skill; each actor/actress is expected to know their roles intimately and perform. Modifications and assistance is provided, but having watched a few performances I can tell you the individuals onstage are the real deal – they’ve worked very hard to perfect their craft!

They offer leadership programs – self-advocacy; public speaking, role-play for the real world; social skills training and private lessons. To me – there couldn’t be a better fit for this type of training than theater professionals, because it’s all about teaching people how to react to social situations and a theater company can model just about anything you can think of. After all – didn’t Shakespeare himself write “all the world’s a stage, and all the men and women merely players.” (As You Like It, Act II, Scene VII).

And, through the Deborah Jean Arts in Hospitals and Hospice Program, they are bringing the arts to health-care; to patients and caregivers. For those of you who haven’t experienced what it’s like to spend weeks, months or even years either in a healthcare setting yourself or visiting one you care about; imagine having little to know freedom of choice or the ability to express yourself. Program participant’s are given choices, and are able to express themselves through the medium they choose. Having spent my last three years of Active Duty at Walter Reed National Military Medical Center, I can tell you this is HUGE!

What Else Should I Know

ArtStream programs are eligible for LISS funding – you just need to work with your provider; and if your provider isn’t affiliated with ArtStream, let ArtStream know and they will work with you and the provider to remedy that. They are actively engaged at Walter Reed, and have been recognized by the DAV through multiple grants from the DAV’s Charitable Service Trust – most recently this year (2016).


I am not an employee of the  ArtStream, 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). I will be posting about at least one organization a month, using information and notes I took when I met with them – as well as additional research I completed online. All opinions and views are my own.


Medicaid Payback

Recently I’ve found myself answering questions about Medicaid payback. This is an aspect of Medicaid planning, and needs to be considered in that context – not as a stand-alone concern. However, it’s easier to explain what it is in a few paragraphs than delve into the complexity of Medicaid planning.

What is Medicaid Payback? In a nutshell, if the state is paying for an individual to receive any type of services (healthcare, home and community-based programs, etc…); the state is required to recover those expenses from the estate of the individual. There are limitations to this recovery, “States may not recover from the estate of a deceased Medicaid enrollee who is survived by a spouse, child under age 21, or blind or disabled child of any age. States are also required to establish procedures for waiving estate recovery when recovery would cause an undue hardship” (Medicaid.Gov).

To be eligible for Medicaid individuals need to meet income and resource limits, showing they cannot afford to pay for the afore-mentioned services on their own (Medicaid Eligibility). The state will provide the family with an accounting of what is owed, however if the individual or the individual’s estate does not have enough to pay it all back it will not carry forward to the family. Because we’re discussing just eligibility through disability, I will not be reviewing the 5 year look back or related strategies.

It’s important to note – the new ABLE (Achieving a Better Life Experience) Act has a provision requiring Medicaid payback. So although the money in the account will not affect Medicaid eligibility (> $100k it’s suspended but not lost); when the account holder passes away any money remaining in the account will need to be applied towards the Medicaid payback before paying out to beneficiaries. Some may say “this isn’t fair”, so let’s explore that. If you were paying 100% of someone’s medical expenses, most of us would want to be paid back. And since Medicaid is a social services program, it’s funded by our tax dollars – so in effect we’re all getting paid back; at least in the sense the money coming back in reduces the amount needed to be raised through taxes (the only way for governments to raise money).

Some special needs trusts have the same provision – specifically first party special needs trusts. Why? Well, a first party trust is established using resources an individual with special needs owns – unlike a 3rd party special needs trust which is established for their benefit using someone else’s resources (Special Needs Trusts). This could be an improperly titled inheritance (making the individual the beneficiary instead of the 3rd party trust), a divorce settlement, lawsuit settlement, etc… This is not limited to children with Special Needs.

In my opinion, there is nothing wrong with the Medicaid payback provision – I don’t think it’s something to be overly concerned about; because at the end of the day the individual is receiving the services they need giving the families some peace of mind. If you would like to avoid the payback, then pay for the services out of pocket. This would allow any remaining assets to pass to you, although you may find yourself spending much more than you’ll receive; especially if the care takes place for years.




Get Your Head Out of the Sand

Recently I attended a Transition Fair put on by the Partnership for Extraordinary Minds with Montgomery County Public Schools, and the information made available to families was amazing. Unfortunately, the average number of participants in each break-out session was between 5 – 8 people. The target audience was for families in Montgomery County who had a child in High School. For those of you not in the know, transition planning is a HUGE deal when you have a child with Special Needs (it’s a pretty big deal even without); because your child goes from an “entitlement” status to a need and funding status. Meaning your child may have a need, but there may not be money; or you may not necessarily be able to prove the need exists.

I frequently have families tell me they’re “too busy”, or “it costs too much” – but this doesn’t make the need to plan go away. All they’re doing is removing the power to do something in a controlled fashion and ensuring they will go into panic mode when services stop, scrambling to put things in place and lamenting how there are no resources to help them. I’m a single parent (widowed) of a child who has Special Needs – I get it! It can be overwhelming and scary, but ignoring it only feeds the monster allowing it to grow. Reach out to your support network, ask for help.

The single biggest thing I learned when my wife passed away was I didn’t know anything, and I didn’t know what questions to ask to determine where to start. Sound familiar? The best way to start is reach out to an organization that works with your child’s diagnosis. Don’t know of any, ask the school or Google – I will bet in 98% of the cases there is an organization out there. Maybe not local, but they don’t necessarily have to be local to be a resource. Attend resource fairs, schools will often send flyers home advertising them; but if you haven’t seen one reach out to the school and ask (or Google). If there’s not a resource, or there isn’t one close by – start your own. Doesn’t have to be disability specific, could just be a group of parents who want to know somebody else understands and can relate, and may be able to offer tips on how to cope. That’s how most of these non-profits started anyway.

The main point is don’t be an island. People want to help, but just like you don’t know what questions to ask – they don’t know what to offer. Next time you see your doctor, ask them “what are some resources/organizations people in situations similar to mine are using?” This goes for any professional you’re working with. We want to help, but many of us assume (wrongly) that silence means everything is good. Don’t be afraid to speak up, the earlier you get help the better. There is absolutely no reason to shoulder everything – this means when you find a resource you have to let some control go.

Not everyone is going to have a natural support group of family and friends. But, and I devoutly believe this, there are resources out there for everybody. Resources don’t mean free, although if you look hard enough you’ll probably find some that are. Resources mean you can sleep at night; let that knot between your shoulders, or the sinking feeling in your gut, go. The worst thing you can do is nothing. If you feel you have nowhere else to go – reach out to me and I will help you.

Special Needs Trusts

I’ve found there is a lot of discussion around special needs trusts, and it runs the gamut from families having never heard of one to families thinking the trust is the ultimate solution. Trusts, in general, are designed to fit specific circumstances – special needs trusts are no different. There are several types of special needs trusts, and picking the correct one is extremely important. It’s also important to consider who is managing your money, my general opinion is family members shouldn’t be Trustees – and I’ll explain why in more detail in a bit. The biggest advantage to using a special needs trust is the ability to maintain social security and Medicaid eligibility, despite having greater than $2,000 of assets. 

What is a Trust

Webster defines a trust fund as “money that belongs to one person but is legally held or managed by another person or by an organization”. Breaking this down, the person the money belongs to is the “beneficiary”. The person or organization holding and/or managing the money is the “trustee”. The person(s) or organization(s) who provide the money is the “grantor”. There may be also be a “primary representative”, somebody who represents the beneficiary and is authorized to make requests for money (disbursements) from the trustee; and a “remainderman”, somebody who receives benefits after the beneficiary passes away.

Types of Trusts

Let’s discuss the types of Special Needs trusts that are out there, and when it may be appropriate to use them. The trust I think most comes to mind is a third-party special needs trust. This is a trust set-up using assets from somebody other than the individual with special needs for their benefit. The other types of trust is a first-party special needs trust and a pooled trust. Let’s explore in more detail

A third-party trust can be established by anybody on behalf of somebody else, really the only limit is it cannot be created using the beneficiary’s assets. So if grandparents want to pay for all their grandchildren to go to college, but one grandchild is unlikely to because of disabilities, they may put the money into a third-party special needs trust for that child. However, if an individual with a disability comes into money – perhaps a structured settlement because of a malpractice suit, or they were designated as beneficiaries in a life insurance policy; they can not create a third-party trust.

This is where a first-party trust is utilized. If an individual has more than $2,000 (as of 2016) of resources they run the risk of losing eligibility for Social Security and Medicaid. As the person with Special Needs accumulates resources, they would put the extra into a special needs trust for their benefit.

The biggest difference individuals and families need to be aware of between a first-party and third-party special needs trust is Medicaid payback. Put simply, this means the State is going to take money from whatever remains in the trust to pay itself back for the cost of Medicaid (the medical benefits the individual received while living). The States will provide a very detailed invoice, and if the remaining amount in the trust is not enough the balance will be forgiven. Likewise, if there is more than enough in the trust to pay the State back, the balance will go to the remainderman.

A pooled trust is a trust administered by a non-profit organization, and houses trusts for multiple individuals in separate accounts. There are quite a few advantages – the limits for contributing and having the money managed are often much lower, it’s administered by a professional organization, and in many cases they will accept an established trust. There are (3) local pooled trusts – First Maryland Disability Trust; Shared Horizons (DC); and the Arc of Northern Virginia Pooled Trust.


In the beginning I mentioned family members shouldn’t be trustees. This is a pretty broad and sweeping statement, and it’s meant to be. A trustee has a critical role to play, they manage the money in the trust, and are responsible for ensuring they continuously act in the best interests of the beneficiary. I think it can be difficult for family members to remain impartial, especially when large sums of money are involved. The upside to having a family member or friend as Trustee is they really know the individual, and they know what you would want. 

So what about a corporate trustee? After all, they may not know anything about the beneficiary, how can you be sure of the beneficiary will have the quality of life you want them to have? First – not all corporate trustees are created equal. Do your homework, learn about the company(ies). Advantages include – stewardship, companies who act as trustees typically have a lot of experience managing assets. They’re less likely to spend frivolously, making sure the money is really used for the beneficiary. Banks, like Sandy Spring; and trust companies, like Cumberland Trust; are examples, but it’s up to you to do the leg work and interview them. It’s also important you collaborate with your estate planning attorney to ensure the trust outlines what you want.

Using a pooled trust eliminates the need to pick a trustee. Instead, you would select who the primary representative will be; and they will request funds from the trust on behalf of the beneficiary. The non-profit managing the trust will evaluate the request and approve it, request more information, or disapprove it. Again – in the interest of the beneficiary using the trust document as a guide.

This is a lot to think about, and thankfully you’re not alone. Work with your team – your financial planner, attorney, accountant and support network to weigh the pros and cons of each choice. These decisions are heavy, as they should be – but once put in place will provide peace of mind knowing your loved one will be taken care of after you’re gone. Ultimately you have the final say, but leverage the knowledge and experience of those around you. The worst thing you can do is nothing at all.


Why Hire a Professional?

Over the years I’ve been asked, and I used to ask myself, why hire a professional – I can do this myself and save some money! This has ranged from things as complex as my estate plan to as mundane as getting a housekeeper; but they all have a few common themes.

  1. Can you focus the time and energy required to do the task well, without sacrificing something else in your life?
  2. Do you have the most up to date knowledge, and more importantly, do you know what questions you should be asking yourself?
  3. Yes – you can do it, and you have the time; but do you want to?
  4. How much will it cost to fix if you mess something up? Would it be less expensive in the long run to hire a professional?

So let’s address these questions, and explore why – depending on the situation – it makes sense to go with a professional.


We’re all busy, I’m sure at some point we’ve all wished we had more time in the day to get everything done. Knowing this, do you really want to add something else? To the best of my knowledge, nobody has added another hour to the day; and we still need sleep to function. So rather than just say “I’ll do it”; consider – when will you do it? What do you have to say “no” to, so you can fit this into your schedule? Finally – which will bring you more satisfaction and happiness? Sounds a little corny, perhaps; but we’ve got a limited time here and there are enough external stressors – why add one more?


Ok, so my housekeeping example probably doesn’t require very much knowledge – so that’s a case where question number 2 more than likely doesn’t apply. But let’s explore (3) other major areas – taxes, estate planning and financial planning.

I don’t think anybody is going to argue with my assertion that the tax code is ridiculous. Thankfully most of us (as individuals, not business owners) only need to worry about this once/year; and not everyone will need to hire an accountant or tax preparer. There is software available to submit your federal return for free, and a nominal rate for your state. However, as your life becomes more complex – multiple properties, children, starting a business, etc.; the need for a professional becomes much more pressing. They will know what questions to ask, and depending upon who you hire; will be by your side if you should be audited. As you leave the world of 1040EZ behind, and start adding 1099 (fill in the type) and schedule A’s; I’ve found it beneficial to have someone who can explain just what I’m looking at.

Estate planning doesn’t have to mean setting up trusts and appointing guardians. It can be as simple as identifying primary and contingent beneficiaries on your accounts. An estate planning attorney will ensure your wishes are clear, and are outlined within state guidelines. Sure – there are online resources like LegalZoom; but these are designed as “simple” solutions. For example, if you’re in a blended family with multiple children and are concerned about who gets what and when; an attorney is a much better resource. They’re also a great resource if you want to know what the state says you can or can’t do – nothing worse than your heirs trying to untangle a mess because the documents prepared online don’t fit within the State’s statutes – which unfortunately often occurs.

Financial planning is more than (or should be) talking about your retirement accounts and what to invest in. This is one aspect of your plan, and if you’re working with somebody on this – great. But there are many more details to your life – buying a home, paying for a child’s wedding, dream vacations, etc… Financial planners can, and will, help you understand what resources are available and how to apply.  They know, and will explain, how all these pieces fit together to provide financial security; and they make themselves available when you have questions because you’re at a crossroad (for example, leaving a job, or thinking of early retirement).


We’re human, and we don’t always like the things we’re supposed to do – so we put off doing them. We know we should eat healthy and work out, but (and I’m as guilty as the next person) we’ll get to it “tomorrow”. Hiring a professional makes us accountable – now we’re more likely to do it because it’s costing us money. Hiring a personal trainer is different than having a gym membership; there’s more commitment. When you pay a professional don’t think of it as giving up control, because you still have a say in what’s happening. Instead, think of it as making somebody else do something you really don’t like doing (in my case – housekeeping and yard). I know I can do this stuff, it’s not difficult and doesn’t even really take that much time. But I don’t like to do it, so I procrastinate. Then, when I finally suck it up and start, it’s so much worse than it has to be. Sound familiar?


“It’s so expensive!” Professionals cost money, there’s no way around it. You’re paying for their experience, education and time; just as you get paid for the work you do. I’m guilty of trying to save money just to have it blow up in my face – with everything from car repairs to painting a house. Many of us don’t think twice about what we’re spending on our cell phone or cable bills, but when it comes time to hire somebody we’re suddenly Ebenezer Scrooge trying to squeeze every penny until it bleeds.

Be realistic – if you attempt to do this yourself, and it’s more involved than expected; how much could it cost? Weigh that against what it costs to hire a professional. Professionals are often insured, so if something goes wrong there are protections in place. Shop around, get quotes or look at websites to see what average rates are – much of this is public information; and if somebody is unwilling to give you an estimate now you have a valid reason not to hire them.

Consumers need to be careful, no doubt. I’m not suggesting every problem needs a professional solution; I’m advocating for people to keep an open mind and be honest with themselves. If you know you need to do something, and you haven’t done it yet; it’s probably time to hire somebody. True issues and concerns don’t get easier or smaller over time, quite the opposite. The longer it’s put off the more difficult it is to overcome inertia and get it done. Life is too short to live stressed out, especially when so often there are solutions available if we just get out of our own way.

Featured Organization – By Their Side

My intent is to feature one organization per month, however I did not publish any in January or February; so there will be one more in March. Taken from their web site ” By Their Side works with Marylanders with intellectual/developmental disabilities and their families to make sure their wishes are addressed and provides advocacy for health, safety, happiness, and rights even when their parents can no longer be there.” I have not found an organization who delivers this service outside of Maryland (not to say they don’t exist – I just haven’t found them yet).

Who They Are

        By Their Side was started in 1965, under the name Maryland Retardate Trust, as a charitable trust with the Arc Maryland, to have volunteers make visits to sons and daughters of parents who made a will provision for enrollment. Over the years the program has undergone several revisions; in 1984 the first updates were made. For the first time paid professional advocates would complete annual assessments; families could contract and direct their advocacy services; families could now provide background information about the individual receiving services to present a more complete picture; and each family paid a fee to join – ensuring the continued financial health of the organization and ability to keep its promise.

In 1992 the program required families to establish funding for services through trusts, will provisions or insurance. Because it’s a family-funded service it’s funding is not affected by the shifting priorities of the State. In 2003 the organization became a 501(c)3 charitable nonprofit, no longer functioning as a charitable trust. In 2007 its Board of Directors changed the name to By Their Side, Inc. They continue to provide families an answer to the question: “When we are gone, who will be by their side?”

What They Do

Three words – advocacy and oversight. When a family joins, they are interviewed to determine the individual and family’s preferences and advocacy needs. They are assigned a personal advocate, many of have backgrounds in service coordination and/or social work and have on average 20 years of experience; who will make assessment visits at the frequency agreed upon by the sponsor and follow up as required should there be any identified concerns. 

By Their Side advocates are not guardians or trustees, although they work closely with each to ensure their clients lead as fulfilling lives as possible. They serve as resources for siblings, and can provide either short or long term assistance. By Their Side offers a variety of service plans the family can choose from.

What Else Should I Know

This is NOT, nor should it be, a free service! These plans are funded by the families – this is not a service provided by DDA or any other State agency. Every applicant is voted on by the Board of Directors, and applications can be found on their web site (provided above).

By Their Side advocates truly have the individuals’ best interests in mind. Unlike service coordinators who may have 60+ clients to keep track of, an advocate with By Their Side typically has between 10 – 15 clients to support; allowing a much more personal and personable approach. By Their Side is a GREAT resource for parents and/or siblings with questions regarding estate planning, service referrals, etc…


I am not an employee of the  By Their Side, 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). I will be posting about at least one organization a month, using information and notes I took when I met with them – as well as additional research I completed online. All opinions and views are my own.

You’re not Entitled, get over yourself

Over the last few years, since I’ve retired from the Navy, my eyes have been opened to what it means (seemingly) to be a civilian. People of all walks of life, with all ranges of abilities, seem to feel like they are owed something. I’m not sure where this comes from, or how it perpetuates, but it saddens me. Rather than working to make their lives better, or perish the thought, helping somebody else improve their situation; they wait and wait for somebody to give them a handout. If this doesn’t apply to you – stop reading; or continue and help me find ways to fix it. : )

I’m a retired, disabled vet – I feel I’ve earned the benefits I receive from the VA. I’m grateful for programs like Yellow Ribbon, but I recognize I’m not owed this. The same goes for getting discounts at stores. There is nothing written anywhere that a store needs to provide an Active Duty member or veteran any type of discount. If they do – great. But if they don’t I wouldn’t say that automatically makes them “unpatriotic” or whatever else you want to call them. The whole point of going into business is to make money, not provide charity (unless you’re a non-profit). You have no idea what cause(s) the business owner supports, or what reasons they have for doing/not doing something. If you care that much about your discount – inquire within (politely & professionally); but they don’t owe you an answer so don’t be upset if you’re shown the door.

The same goes for this push to employ Veterans. I think it’s awesome, but I think we are deluding ourselves if we believe this going to be the status quo indefinitely. Active Duty military (and veterans) need to think about life post-service – what makes them marketable. What jobs have they done in the military that will translate into something an employer is willing to pay for. Think about your soft skills – conflict resolution, communication skills, etc… Leverage these on your resume and interviews. Most importantly – don’t hesitate to network with those who have never served. Will they “get” you, maybe not – but who cares?! They’ll pay you, and at the end of the day that’s why you’re talking to them in the first place, right?

I can also relate to families with Special Needs. Here I’m willing to soften my stance a bit, because more needs to be done to manage their expectations. When a child is diagnosed with a disability typically the school system provides a LOT of support. The family is ENTITLED to this support, it’s their right. However, this entitlement STOPS when the child leaves High School – through graduation or aging out at 21. Here is where I find families getting themselves into a bind.

They’ve grown so used to being able to turn to somebody for services or answers they’ve grown to expect it. When their child becomes an adult they want the same treatment, but that’s not how our system works. I do my best, and I think schools could/should do a much better job, to educate families about what happens when their child leaves school. DDA and support organizations will screen the individual, and provide services based upon need and the resources they have. These resources are finite, they come from our tax dollars; so it’s very likely you will not get everything you think you need/deserve.

Parents, relatives, loved ones and friends need to be proactive and think about life after school. What can they do now to help their child have a successful transition. This probably means they will need to start working on it before the school comes to them and says let’s discuss transition. Yes, the school is required to help families with the transition process, but this is your child and nobody is going to care as much as you do. Leverage the schools, but do your own homework. Network with families that have made the transition, often  you can learn more from somebody with a not so successful story than you can from somebody who had everything fall into place.

Yes, there are people who have entitlements, and should absolutely do everything in their power to get what they deserve. Organizations like the DAV and VFW are phenomenal resources for veterans, and cost nothing – you don’t need to be a member to be helped. In many other cases you will need to do some research. Maybe it means hiring an attorney to take your case – good attorneys will let you know ahead of time whether you have a case or not. At the end of the day though, you are the one being affected – so whether you’re entitled or not it’s in your best interest to plan for the worst case scenario.