Entitlement

I’ve heard a lot of discussion, for and against, government forms of support – Medicaid, SNAP, housing, etc. Most of the comments seem to focus on who should or shouldn’t receive the help – but none of those making the comments fit what I would see as “qualified experts”; which to me is individuals who have worked in these spaces or are experts on the benefits themselves.

It feels like there is a LOT of anger about those who don’t “deserve” benefits receiving them. In fact, on more than one occasion I’ve been told the government is doing “too much”; and everyone seems to have a story about someone they know who “deserved” benefits not being able to receive them. Yet when I ask clarifying questions to understand what led to the benefits being disapproved I’m met with disgusted looks and/or change of topics.

As I’ve said before, I do not doubt the system is being abused. I’ll even admit it’s “broken”; but I believe we should look at making repairs and tweaks – rather than do away with the entire thing. Let’s focus on Medicaid to provide a concrete example. And we should be very careful about what changes we make – beware unintended consequences.

Medicaid is health insurance for those with disabilities and the destitute. There is discussion in progress cut $1.4 Trillion (with a “T”) in Medicaid (See Article Here). Sounds reasonable – save the government money. However, this could force States to reduce their funding, hurting those who need assistance most. “The Congressional Budget Office estimated on a preliminary basis that Graham-Cassidy would result in the loss of health insurance coverage for “millions,” cap federal Medicaid payments to states, and give states the option of imposing work requirements on parents with children over age 6 (Andy Schneider, 2/12/2018).”

Yes, people need to work. But what if you have a child with significant support requirements, and one of the parents is a full-time provider? This occurs more often than I think most people not impacted by a disability realize. These families are not advertising their situation, they are putting their heads down and doing everything they can to survive. In many cases they didn’t ask for this and without the extra funding face losing their homes.

Safety nets, like Medicaid and SNAP, are in place for a reason. If you find yourself begrudging someone of this assistance, ask why. In some cases it almost sounds like jealousy – yet when you peel the onion back those same individuals complaining have, more often than not, made some poor life choices putting them in the negative financial situation they are in – without the option of a government “bailout”.

Again, this is a generalization. Yes, there are deserving people who cannot get services. My son, for example, did not get approved for the amount of SSI I had expected and a few of the items I filed with the VA were found to not be “service-related”. There are processes in place to contest findings you don’t agree with; or you may have to learn to live with it. If you want to increase the odds of your success, talk to those who have gone before you.

But don’t fault another family for doing what they need to do to survive. You don’t know their circumstances – when was the last time you were completely open about what was going on in your life with a complete stranger (who wasn’t your physician)? Want to change the system(s), look for ways to create opportunities for those less fortunate than yourself. Offer hand-ups, not hand-outs – and stick to what you control. I think you’ll be happier for it.

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Special Needs Planning – More Than An IEP

When you have a child with a disability, much of your energy may be spent in ensuring he/she receives the education they are entitled to. And make no mistake, this can be a HUGE battle. However it’s not the only consideration our families have. We need to think beyond school, and we need to think about ourselves (parents/siblings). This isn’t selfish, quite the opposite. Because if we don’t take care of ourselves, we’re setting the individual(s) with the disability(ies) up for future failure.

Families should make the time to think about their future – what do parents want to do, who will take over when they are gone or can no longer fill the role, etc. Speaking as a parent, the first thing which comes to my mind is “who has the time or bandwidth?”. This is why I think it helps to work with someone, let them do the heavy lifting. It’s why I hired an attorney for son’s SSI claim even though I felt I had an “airtight” case; as well as hiring another attorney for guardianship and estate planning.

The Social Security attorney will be paid by the first payment we receive from Social Security – if we don’t get paid neither does he. And I’m not going to miss the money, because I don’t have it now. For me, it was a no-brainer. Guardianship is a different story, you will need to decide if it’s appropriate for your situation; or, is supported decision making a better solution. Find a support group, talk to those who have gone before you and do your best to make an informed decision.

Estate planning is non-negotiable in any situation, but especially when you have a child(ren) with a disability. This is NOT about you, it is about ensuring your child(ren) is not left alone to figure things out when you’re gone. It’s hard enough for families without disabilities.

Financial planning should be more than investments and insurance. Yes, both of these play a role, but your life has more nuances than this and so should your plan. Consideration should be given to YOUR goals and how you can achieve them – are there resources you hadn’t considered or weren’t familiar with (or just haven’t had the time to research). Discuss social security – for you and your child; taking into consideration the impact of your filing if your child qualifies for the Adult Disabled Child benefit.

What does retirement look like for you? For your child? Will your child have enough to enjoy the quality of life they have now when you are gone, or do you need to put guardrails in place? What about you? Are you sacrificing your happiness to provide for your child (we all do this, to some degree). Perhaps there are resources and options you’re not aware of to give you a break (respite) or lower your monthly expenses allowing you to treat yourself now and then.

Education is important, and having hired an education consultant to help my son transition from middle to high school I understand it’s not always easy or inexpensive. However; there will be lulls when you can, and should, think of yourself. Most importantly, you’re not alone. You’re not the first, or only, parent to face challenges – even if others haven’t faced the same ones, the tools they used to cope may help (or you can adapt them to your situation).

I’ve been doing this “alone” for (6) years now, since my wife passed in 2012. The biggest mistakes I could have made would have been focusing on just one aspect and not asking for help. “Outsource” what you’re not good at, and help others using your strengths. You don’t have to be a charity, but I do believe you need to treat others as you would like to be treated (fairly). Again – you’re NOT alone. I know how overwhelmed I have felt, and I have thought “noone else understands what I’m going through”. Then I forced myself to find others who have overcome hardships and I mined them for information and strength (and still do). You can too.

Self-Directed Advocacy Network of Maryland

I’ve only recently become aware of the Self-Directed Advocacy Network of Maryland, Inc (SDAN); and it gives me significant hope and excitement because my son and I have every intention of self-directing our services. For those not familiar with disability services, self-directed means (overly simplified) individuals  can pick and choose for themselves who provides which services and controls the funding paid for those services.

Who They Are 

Self-Directed Advocacy Network of Maryland, Inc is a group of participants, families and advocates for Self-Directed Services (SDS) in Maryland who have banded together to raise awareness and advocate to Maryland’s Developmental Disabilities Administration (DDA) and state lawmakers to uphold the right to self-determination for people with disabilities. They serve as a united voice for individuals and families, offering another (not necessarily “better”) way to receive services.

What They Do 

They have created cost effective individualized programs complying with the Federal Medicaid Guidelines; and they work WITH DDA to maintain person-centeredness and family involvement. They are an advocacy agency, and you can find the 8 Points they use to clearly state their key talking points around advocacy here.

 

What Else Should I Know

Although SDAN is a non-profit, and is funded through grants and donations; you can also support their mission in non-financial ways. Their website has a list of (14) non-financial opportunities, and I’m certain this only scratches the surface. The biggest step is just getting involved. They have regional meetings, which would be a great first step to learning more about SDAN. Find a meeting close to you here.

Disclaimer

I am not an employee of Self-Directed Advocacy Network of Maryland, Inc; 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.

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.

 

Oh SNAP!

I may be hypersensitive to this because of my concerns for my son’s benefits, but it feels like a common theme when trying to cut government spending is reducing what is spent on public programs – like SNAP or Medicaid. To add insult to injury, this seems to become a bandwagon, with the most vocal people chiming in about how the majority of people they see using these programs are abusing them.

I’d like to challenge this with one thought – you see what you look for. If you’ve convinced yourself (or allowed yourself to be convinced by media) these programs are only being taken advantage of; then because of a phenomenon known as confirmation bias, this is exactly what you will see.

SNAP, or Supplemental Nutrition Assistance Program, is designed to help people put food on their tables; but the benefit is not large enough (by design) to allow people to live off surf and turf every night. The USDA website provides an overview of what SNAP can purchase, and notably absent are things like alcohol, cigarettes, pet food, soda, candy, etc.

This program also places strict limitations on how long “Able Bodied Adults” (age 18 – 49 w/o dependents or a disability) can receive benefits – 3 months in 3 years, if they don’t meet special work requirements. I’ve included a link to the SNAP eligibility page here; because I think it’s important we form our opinions from verified facts, rather than blindly believing what we’ve been told. And please, take a moment if you catch yourself trying to argue to really explore where this feeling is coming from – is it because you don’t want to be proven wrong, or can you substantiate your belief with facts.

Is there abuse, almost certainly. The unfortunate truth is there will always be those who try to take advantage of a system. But a bigger truth is approximately 41 million Americans struggle to put food on the table (source Feeding America). Poverty is real, it’s not as simple as telling the elderly, those with disabilities or just out of work to “find a job”. Are you hiring?

Don’t be quick to judge next time you see someone using a SNAP debit card, this could be you during the next economic downturn or after a random accident. Take some time to educate yourself on the benefit amount and restrictions by going to the source, not Fox news or CNN. For convenience, here’s a link to the USDA website. And perhaps most important of all, don’t lose sight of the fact these are people, just like you.