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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One Thing

Recently I’ve found myself focusing on the wrong things – what is not going well instead of what is. To me, this is the wrong thing to focus on because it becomes what I see – once it’s front of mind it morphs into the lens I look at everything through. I don’t think I’m unique or unusual, I’m betting more people than not have similar experiences.

But it’s SO easy to fall into this trap. It often starts with a “vent” to someone, or listening to someone else and then commiserating. Gradually, so slowly I don’t think many of us even know it’s happening, it becomes the centerpiece of our conversations. We’re sharing what is going wrong, how f’d up the world is and how we can’t seem to get ahead. And it feels like things continue to stack up against us. Does any of this sound familiar?

You can break this cycle. I’m not saying bad stuff will never happen to you, sadly this is part of life. But you can control the narrative. You can control what you focus on, and what you share with others. I’m certainly not suggesting you don’t ask for help when it’s required. Rather this – if you find yourself wanting to “vent”, ask yourself if there is anything constructive. It may be you need to share to process what you’re feeling and put it to bed; then do so.

But don’t fixate on it. Instead, think of at least (3) other, positive, things happening in your life – and share those as well. This will start to break the cycle, and open your eyes to all the amazing and good things in your life. And we all have them – no matter how dark things may appear.

It’s hard to get perspective when you’re living through tragedy or stress. Having a family member with a disability can be overwhelming; as can other situations like caring for a sick relative, looking for a new job, etc. But there are always opportunities to give thanks and acknowledge what is going right. There is a Cherokee parable about 2 wolves – I think it’s the best analogy for what I’m trying to convey. You can find the parable here.

It’s addicting to “vent”, share your problems with others. But when you’re not solving them you may be giving them power over you. Allowing them to control how you feel, casting yourself into a feeling of sadness or hopelessness. Break the cycle by starting to share what is going well. Even if the only thing you can think of is you woke up (this was my starting point after my wife died). Eventually, you’ll be happier and it will become almost second nature to focus on the positives rather than the negatives.

Keep working on it. I have let my guard down, and slipped into old (bad) habits. But now I’m aware, and I can (and will) do something about it. So can you. You deserve happiness, but it’s on you to allow yourself to feel it.

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.

Veterans Pension (VA)

There is a LOT to cover when discussing Veterans and Survivors Pension (VA), this post is going to focus on income – because I have found it to difficult to determine how much income someone can earn, and maintain eligibility. Included are links to the information I found, and if anyone reading this has new/different data (and can support it) please post in comments. I will make multiple posts as I explore the VA pensions.

Income is defined as “payments of any kind from any source” (Statute 3.271); and includes recurring (equal amounts and at regular intervals); irregular (unequal amounts or irregular intervals); Nonreccuring (one-time basis during a 12-month period); Salary (gross earnings); Business, farm or professional income (depreciation and losses may not be deducted from other income sources); income from property; and installments (total amount anticipated/received over 12-months).

When considering income, you are allowed to make certain deductions to determine your eligibility (get your income below the threshold). For a veteran without a spouse or child, 2018’s annual income must be below $13,166 (Veteran Pension Tables). For a survivor w/o a child, the annual income is even lower – $8,830 (Surviving Spouse Table).

The following items will not be considered income:

Welfare – donations from public/private relief agencies. Maintenance – “The value of maintenance furnished by a relative, friend, or a charitable organization (civic or governmental) will not be considered income.” VA pension benefits are not counted as income. Casualty loss reimbursement. Property sales (profit) and joint accounts (when the individual becomes sole owner through the death of the other owner). Survivor benefits are not counted.

In certain cases, unreimbursed medical expenses may be used to reduce an individual’s income (verbatim from Code):

(i) They were or will be paid by a veteran or spouse for medical expenses of the veteran, spouse, children, parents and other relatives for whom there is a moral or legal obligation of support;

(ii) They were or will be incurred on behalf of a person who is a member or a constructive member of the veteran’s or spouse’s household; and

(iii) They were or will be in excess of 5 percent of the applicable maximum annual pension rate or rates for the veteran (including increased pension for family members but excluding increased pension because of need for aid and attendance or being housebound) as in effect during the 12-month annualization period in which the medical expenses were paid.

This is just a very light overview of all the variables to be considered. If you know a veteran, surviving spouse or disabled child who earns less than $15k my recommendation is find a veteran service organization (VSO) and work with a chapter service officer to submit a fully developed claim. VSOs do NOT charge money to help veterans and their dependents file a claim – this is a FREE service. For a list of VSOs click here.

 

Inertia

I’ve been thinking a lot about inertia, and the impact it can have on one’s life, family and career. The picture I chose only tells half the story, inertia’s definition (Webster) is “a property of matter by which it remains at rest or in uniform motion in the same straight line unless acted upon by some external force.” Or in simpler terms, things staying exactly as they are until someone does something to change this.

How does this impact our life, family and career? How many of us have maintained the status quo because we were too afraid or just comfortable? I know I’ve been guilty of this, and if I’m being honest with myself; still find myself going with the flow because it’s “easier”. I’ll tell myself I don’t have the bandwidth to take anything else on, but I believe differently.

My life will not get any easier if I wait a few weeks, months or years. All I’m doing is allowing myself to become more comfortable with how things are – and making it much more difficult to gain enough momentum in another direction to overcome inertia. There is nothing wrong with being satisfied with where you are; I only have an issue with accepting where you are because it’s too much work to do anything else. I struggle to explain the difference – it boils down to have you achieved what you set out to achieve, or did you “give up” because it got too difficult or you lost sight of your original vision.

I have found life has a funny way of offering scenarios of “good enough”; where you have struggled for a while and found a plateau which, on the surface, appears to have everything you’re looking for. I haven’t found my true peak,  yet. As I come to each plateau I find myself wanting more.

Here’s where inertia comes into play. Giving myself enough of a push to let go of what is comfortable to reach the next level. It also means acknowledging there will be “speed bumps”; after all, I’m a single father of a child with disabilities and he will always come first. But, and this is a HUGE caveat in my mind; there is absolutely no reason for me to allow myself to become stagnant while helping him on his journey. I should, and for the most part do, continue looking for ways to overcome inertia so when (not if) the opportunity to complete the next part of my journey presents itself I am ready and only need to give myself a small nudge, rather than a hard shove.

I’d like to challenge all of those reading this post to look inward. Have you accomplished what you truly wanted to? If you have, take pleasure in having overcome the obstacles I’m sure you had to best. If you haven’t, what can you do to shift from an object at rest, to an object in motion in the direction you most desire?

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.