MEDICAID

Normally I’m agnostic, at best, when it comes to politics – however with the threat of cuts to MEDICAID as a means to fund a new healthcare bill I cannot stay silent. I admit I have selfish reasons for my concern, as my son is very likely to be negatively affected should MEDICAID cuts take effect. I’m not looking for to argue, and I’m going to do my best to leave my opinions out – sticking strictly to the facts as I understand them.

My plan has been to help my son live as independently as possible, through the use of self-direction – rather than relying on an organization for Residential, Day or Vocational programs. I would provide his home, help him with the job search by coordinating with DORS; and, whenever possible, avoid any type of Day program.

For those of you without family members who have a disability(ies) some of these terms may be completely foreign; and I encourage you to do your own research on what these programs are, and how they are administered. Each of these programs are protected, MEDICAID would still pay for them – however, if shifted to block grants States may not be able to fund these programs to the current level; because the Federal government is currently heavily subsidizing them. The same is true for programs for the elderly, everyone who cannot afford long term care is receiving it through MEDICAID. Again, subsidized by the Federal government.

Self-Directed services are covered by MEDICAID waivers, and these waivers are not guaranteed. What would likely happen is these programs would be cut, because although they are less expensive than using organizations; States would need to continue paying the organizations – so the money has to come from somewhere. It also means the States would need to reduce the amount of money they are providing to the organizations; forcing these non-profits to rely more heavily on private donors.

There are waiting lists for services, my expectation would be these lists would grow in size; because scarcity of resources. The Henry J. Kaiser Family Foundation has a fantastic article about Block Grants, so rather than try to recreate it I’m providing the link here.

To be clear, it’s not the idea of a Block Grant I oppose, it’s the rush to get a solution in place by the end of September. I believe these grants may be part of the overall solution, but in my opinion we need to do more prep work. We need to work with provider agencies, helping them shift their focus to fundraising. We need to educate families; and work with insurance companies – explore if there are opportunities to have more of the services needed covered; even at the risk of higher premiums.

MEDICAID serves a purpose. I acknowledge the issue of fraud, but block grants won’t solve this. There will still be individuals and families who do the best they can to transfer their assets so they don’t have to pay for their long term care; and other instances. But let’s be fully cognizant of who the majority is – individuals with disabilities and the elderly. Is this really who we want to cut benefits for?

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The Struggle is Real

Lately I’ve been on a kick to help people motivate themselves to maintain momentum, if moving forward; or overcome inertia if they’re at a crossroads; and today I want to share a few of my current challenges and strategies.

My son turned 18 recently – leading me to start the process for his SSI, updating DFAS so he maintains eligibility for my military pension and TRICARE, and updating the VA to keep my disability payments at their current level (with a dependent). Given his disabilities I’m also applying for Guardianship. As you may be able to imagine (or perhaps can relate having been through already), this in itself can feel like a full time job.

The first challenge I’ve come across is how to help my son receive his full SSI benefit and the adult disabled child benefit (survivor benefit) from my wife. If both go to traditional savings or checking accounts, the SSI will be offset by the other benefit. So my first thought was his ABLE account, because the assets are not considered when determining SSI eligibility.

Unfortunately, his ABLE account is not equipped to receive electronic deposits – so Strike 1. No problem, I need a 1st Party Special Needs Trust anyway, for the military’s Survivor Benefit Plan; I’ll just send the adult disabled benefit there. My intent was to complete ALL the estate documents at once – 1st & 3rd party SNT’s, Guardianship, DPOA, etc – and I was on a great trajectory.

Was being the operative word. I was able to get the Physician’s letter, no problem. However, I also need a Social Worker letter – and because he’s never received services (DDA “future need”) – he hasn’t worked with a Social Worker. His teacher gave me a couple options, and although neither was viable I appreciate her time and effort. So now we’re in a sort of limbo while I figure this piece out.

Rather than let the whole process stall, I’ve decided to move forward with everything else, and finish the Guardianship as I’m able. I’m also working on engaging the DDA again, since my son is an adult and they should be able to help me with the transition from High School at age 21.

The last piece on my plate (as far as I’m aware) is following up with DORS again – getting my son employment assistance. I’ve been working on this for (2)  years, since he turned 16 – it had been my hope to have him working summers; getting used to the routines necessary to be successful post-high school. That hasn’t materialized, yet, but I will redouble my efforts towards the end of this school year.

All of this is meant only to show I understand how frustrating and time consuming it can be. And I get it can be overwhelming, especially if it’s all taken into consideration at once. The best thing I think anyone can do is pick one item and work it until the next steps are out of your control; rinse and repeat. Not sure how to prioritize, ask for help. I started a company – Special Needs Navigator – just for this purpose, and it’s my belief there are other resources like this throughout the country; although it may take some work to find them.

Don’t give up, as the image I selected shows success could be the next step you take. If you’re feeling overwhelmed, stop and take a breath. Help yourself, establish routines to give yourself a mental/emotional recharge – the pause and refresh will help you identify alternatives you may otherwise miss. Keep charging – you’ve got this!

Adversity – Furnace or Forge

Life can be difficult and is often unfair. I don’t think anyone would argue, and I’m willing to bet many of us have felt like throwing our hands in the air and saying “enough is enough – I quit”. The difference is what happens at this point – do you actually give up, consumed by the fires; or do you push through, overcoming the situation/circumstance with new tools and beliefs?

I’ve done both, it’s taken me many years to recognize there is always another side to adversity – it’s just how long it’s going to take you to get through. The more you do to help yourself when things are going well, the shorter (generally) the impact will last. The trick, in my opinion, is understanding (1) you’re not alone, and (2) you have more tools than you may be giving yourself credit for.

Develop habits when things are going well, so you don’t need to think about “how” to do something when life throws you a curve ball. Commit to sitting down with the most positive person you know at least twice a month, when you are at the bottom of a hole they can extend a rope; and if it’s a habit/routine they will know may be up if you miss one or two appointments.

Financially, commit to setting aside at least $25 each week in an online savings account – where you don’t have ready access. This creates the habit of spending, but it also gives you a lifeline when those “oh craps” occur. If you can afford to do more, then build up gradually to what you’re comfortable setting aside – but don’t start too big. The intent is to not notice it, so you will continue.

When bad things happen look for correlations to how you are feeling. At some point in the past you more than likely felt very similar, even if it was to a lesser degree. How did you overcome it then? Use those tools, adapting as necessary to fit your current circumstance.

Some changes cannot be undone. I will never get my wife back, nor will my son’s Autism go away. That doesn’t mean we can’t, or shouldn’t, live our lives to the fullest. We’ve adapted, and so can you. Do your best to never let circumstances identify who you are. Continue to grow, seek new experiences and don’t fear failure. And as I’ve said so often before – quit trying to be a one-person show. Instead be the conductor and surround yourself with people who have achieved what you’re aiming for and have similar values and ethics.

The Right Time is NOW

It’s so easy to justify putting something off, something else always seems to come up or there’s just no time. This is BULL, and if we’re honest with ourselves we all know it. There is never going to be a better time than right now to take action. “Need” to lose weight or save more? What does waiting until tomorrow get you?

Since I left the Navy and started my journey into the disability world with my son, I’ve seen (and been guilty of) entirely too much inaction. People will come to Resource Fairs and walk away with great information, but I can only wonder how many follow-up. Talking to some of my fellow vendors the number is nowhere near as large as we’d like.

I think this is because we let life get in the way – at least it was for me. I’d come home on a Saturday, with several folders of information, put them down and forget about them. It was information I needed, and I knew I needed, but I told myself I would get to it on Monday. Unfortunately by the time Monday got here I had not only forgotten about them, I was already overwhelmed with what the week was bringing – I wouldn’t have been willing to do anything even if I had remembered.

I broke this cycle by forcing myself to take 10 – 15 minutes when I got home, reviewing the materials and sending an e-mail to those I wanted to follow up with. This got the ball rolling, and when Monday came the responses I received ensured I followed through.

Sure, I put my name on the mailing lists; but more often than not I would just ignore the e-mails – not even replying to state I wasn’t interested because I felt like it took too much bandwidth. If this sounds familiar, I can tell you it’s not going to get any better on its own – all that will happen is time will continue passing you by, until some crisis doesn’t allow you to ignore it any longer.

So if there is something you’re thinking of doing, then do it. Don’t set it aside, because life doesn’t get any less busy (at least not in my experience). Frequently letting something sit will cause it to morph into something much bigger than it needs to be; making it even more likely you won’t take action. At some point YOU need to make a change, it requires an act on your part – well, probably several, because it takes time to make this into a habit.

So take a look at your situation and take action on the first thing you think of. Don’t spend time considering which item on a laundry list you should address, this puts you at risk of being overwhelmed by choices. Just pick the first thing that comes to mind, knock it out, rinse and repeat. Find an accountability partner, someone who will help you follow through – we all need one; it’s too easy for us to accept our own excuses. I encourage everyone to check out Mel Robbins’ 5 Second Rule; it helped put things in perspective for me.

VET TIX

VET TIX provides tickets to events which reduce stress, strengthen family bonds, build life-long memories and encourage service members and veterans to stay engaged with local communities and American life. We support our troops by honoring their service and providing positive family and life experiences, during and after their years of service to our country (Retrieved from https://www.vettix.org/index.php). As a veteran I’m honored an organization has taken this unique approach to help Active Duty military and veterans; and I want to help them get their message out.

Who They Are 

VET TIX has (2) programs I’m aware of, Tickets for Troops and Hero’s Wish.

Tickets for Troops uses partnerships with major sports teams, organizations and event ticket holders to give active duty military and honorably discharged veterans free and discounted tickets. Military personnel, especially junior enlisted, do not make very much money – this is an amazing opportunity for our service members.

Hero’s Wish aims to ease the burden on families who have lost a loved one (KIA), been injured (WIA) or is currently deployed; by providing a once in a lifetime expense at an event. Their services are available to active duty personnel in a 6 month before/after deployment, severely wounded, or families of those killed in action. They provide a list of current hero’s wishes here.

What They Do 

VET TIX’s website has a link for veterans to create an account – where you will identify the type (active duty, retired, etc). From there they will verify the information, because they want to ensure veterans, and their families, are the ones being served. The applicants will let VET TIX know what event they would like to attend, and from there VET TIX works to secure tickets. The attendees will pay a small fee, much less than the full cost if they were to buy it themselves, to receive their tickets.

What Else Should I Know

 

Two of the three founders served in the military, and the third’s father had served – so all three are familiar with the sacrifices service members and their families experience. Their Core Values of Patriotism, Support & Recognition, Quality of Life and Family really resonated with me – and as I learned more about VET TIX it became clearer and clearer that they are the “real deal”.

Disclaimer

I am not an employee of Vet TIX 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.

Make Inertia Work For You

I chose the image for this blog because I think it’s what most people think of when they hear the word “inertia”. Sadly, this is only half the story. Inertia means something is going to maintain its current state until acted upon by an outside force. So yes – if the object is at rest, it will remain at rest. BUT, and this is IMPORTANT, it also means if an object is in motion it will remain in motion.

I’m passionate about helping people become successful, and often the first step is overcoming their current state of inertia. When you’re not doing something it becomes much easier to identify ALL the reasons not to change – it’s the wrong time, it will cost too much, etc. Let’s assume all of these are valid concerns; when are they going to change? The truth is most of them will not. The universe isn’t going to line up the stars, moons & planets for your convenience; and products/services are going to continue rising in cost (or fade away).

So instead of focusing on reasons not to do something, identify WHY you want to make the change. Something had to drive you to this point, and if it’s truly important to you do take action – any action, no matter how small.

Taking action overcomes your current state of inertia – it’s the force necessary to start momentum in a different direction. The longer you’ve been in your current mode, the more effort you are going to need to exert to enact the change. Don’t give up if you don’t see results right away; things take time.

Think of any changes you’ve made recently – be it weight loss, changing jobs, or going back to school (to list a few examples). When you first started it probably sucked, it was uncomfortable and you had to get into a new routine. Eventually you stopped noticing, and it just became a habit; inertia has set in.

Understanding this is important, because you can use it to help yourself become more successful. Let’s use networking for example, because I think most (if not all) of us need to network to some degree; and many of us have an immense dislike for it. Start by introducing yourself to at least one new person everyday, and make small talk. As you become more comfortable with this expand it; get to know everyone in your company – not just those you interact with every day. Before you know it, it will have become second nature and you’re on your way to mastering a new skill which (in my opinion) will go a long way to aiding your success.

Inertia is difficult to overcome, so don’t be afraid to seek assistance. Use an accountability partner, someone who will call you on your excuses and offer encouragement. They will also help you maintain perspective, because it’s often difficult to notice change within yourself – especially when it’s occurring gradually.

So what are you waiting for? September is just around the corner, let’s end 2017 with a BANG. Pick one thing you’ve been “meaning to do”; find yourself an accountability partner (friend, trusted advisor, family, etc); and put inertia to work. Let’s get your constant velocity angled upwards – 2018 look out, because here we come!

Peaks & Valleys

Last week I was reminded of how quickly a high may be turned into a low – having been recharged from a retreat, and yet within a few days losing my patience for something I had thought my son had mastered. It was wrong of me to lose my patience, but I (like most of us) am only human and I have my faults. One I continue to work on is understanding just because my son may have seemingly “mastered” a skill, doesn’t mean it will translate naturally into a very similar skill – as it usually would for neurotypical peers.

When things happen to upset my equilibrium, I think back on the lessons Spencer Johnson covers in his book “Peaks and Valleys”. I first read the book the year my wife passed, when I couldn’t conceive of how I could be expected to do much more than just get out of bed and put clothes on. I’m not going to outline the entire book, but the premise is there will always be highs & lows; it’s up to you to note how you achieved your high and what brought the low – empowering you to increase the highs and decrease the lows.

I think I’m still processing those lessons – I certainly haven’t mastered them yet, even after (5) years. I believe we need to be ready to understand concepts, it’s not enough to tell ourselves we’re going to change – we have to internalize the reason we are making the change. I remember thinking I wanted to be happier after my wife passed, yet part of me felt guilty when I was in a good mood – I had to put that to rest.

This is one example, particular to me; but I think any of us who have something we say we want to accomplish, but are not truly doing what we need to be doing to accomplish it, can identify a demon we haven’t put to rest yet. This is, in my totally non-professional opinion, normal; it’s our valley(s).

We will start the climb to the peak when we acknowledge we have these thoughts. The climb will be longer for some than others, as we all make peace with ourselves in our own way. Some will work with therapists and caregivers, much like climbers hire guides to show them the most accessible (yet not necessarily any less difficult) paths to the top. Others will do their best to go alone, or work with someone who has been where they are and can show them how they got out. Some of us will have storms interrupting our progress, stopping us from as high as we could climb and forcing us to start over.

It’s not enough to say “don’t quit”. Not quitting doesn’t mean you’re going to be successful – Wile E Coyote never quit, look what that got him. If you are struggling, ask for help. At a minimum, find someone to open up to about what you’re struggling with. Speaking for myself, I often find new solutions I hadn’t considered when I verbalize my challenges. I’ve also received some incredible insight (although I’m slower than I like to admit to take action on recommendations).

At the end of the day remember this – every single person has something they are struggling with. What could be a significant challenge to them may seem minor to you, and vice versa; this is the beautiful thing about perspective. Rather than belittle them for their perception, help them find solutions. Find people that will do the same for you – they’re out there. Don’t let yourself get trapped in a valley, the view is much better at a peak!