Am I not disably enough for the disabled club?


So, it’s been a little while since we’ve written a post on the Help a Quad Out Blog, but if you’ve been following us on Facebook you’ve seen our posts talking a little bit about the goings on happening in the background of our life and with the project.  Those of you who have been following will recall a few of our most recent posts have mentioned a shocking revelation we received this week at the Social Security Office, and some mixed news that we received after meeting with Tan’s counselor at Vocational Rehabilitation.

I’ll begin with the shocking revelation from social security. I guess I should start with the letter we received from them at the beginning of the week–well, the letter is really more like a receipt confirming our reported monthly wages to social security. At the beginning of each month both Tan and I have to submit our monthly earnings from the month past–we choose to use their mobile app method of reporting–and these reports are figured into this formula that determines the amount of award that Tan is paid the following month. Now, you may remember a few months back, when the HQO Project took off, I wrote a post about one of the financial stipulations to receiving supplemental income from the government is that the individual could not have a financial holdings of more than $2,000–this included Tan and I as a married couple. Like many people now, we receive most of our bills and statements electronically, so checking the mail is sort of a once in a month thing for us since I can just sign on to any site I need and check our bills and balances. Super handy, right? What those electronic updates don’t have is some of the extra information that government agencies like to stuff your letters with, reminding you of your obligations to them, the things you can and can’t do, and a general reminder that Uncle Sam is watching you. This time around, in the letter-slash-receipt, Uncle Sam revealed some interesting news–the maximum amount of financial holdings that a couple is allowed to keep at any given time is $3,000!

Now, what’s the reaction you give to this kind of news. The range of thoughts and emotions that we personally went through could go on in an endless conversation here, and is colored by sixteen years of experiences, more frustrating than helpful. It’s a topic that should be explored and discussed, and perhaps one day we will, but for today the importance is that we now know that as a couple Tan and I can have a combined financial holding of $3,000 (that includes checking and savings combined). Not great news. Not news that benefits us so drastically as to make a difference, but it’s important that the right information gets out there.

And then yesterday happens. Filing paperwork for Tan is an endless stream of getting letters from Social Security. For what? That answer is endless, too. The short explanation: any paperwork that asks about income, proof of income, holdings, banking, anything money related, will need a letter from Social Security. So off we went to our local office to get a letter providing proof that Tan’s next medical review for disability will happen within 5 to 7 years of his last medical review. Just to quickly explain medical review, it’s another fact finding mission that requires Tan periodically prove with medical exams, interviews, physicals, and doctor’s reports that Tan is disabled and that he’s not going to miraculously get up and dance a jig any time soon. Seems pretty cut and dry, and certainly not the most difficult letter I’ve ever had to request from Social Security for Tan as these reviews are scheduled by a computer and made automatically after the close of your most recent review. What was it that this counselor told us, what was just hilariously flustering to me, but boy was Tan spitting mad  at (that’s a feat, lady’s and gentleman, as Tan is the cool as a cucumber one in the relationship and I’M the one prone to violent rages)?  The counselor gently slides the paperwork I had handed her back to me under the plate glass protection and says, “I can’t write this letter for you because he is on a 3-year program.” Perplexed Tan and I looked at each other and then at her. She then offers to write a letter for us stating that he’s on the 3-year program, and while we accept, it’s more an automated response than a conscious one. Both of us are still hung up on the 3-year program information. Both of us lean closer to the window, like this is some quiet conspiracy no one else can know about, and ask, “What’s the 3-year program and why is he on it.”

Now, before I give you the answer, let me just put it out there that this doesn’t make any more sense to me even knowing why. Essentially, different disabilities are given different programs, or schedules when they have to go into review. This is based on the type of disability and various factors such as recovery rate and medical advancement. To give you an example, a congenital disease may be seen as incurable and given a review period of 7 years, while hearing impairment may be viewed as being treatable by medical advancements in technology and therefore given a yearly medical review period. Spinal cord injuries are given a review period of 3-years, hence the 3-year program, because medical advancement could have him walking again. While my response was to giggle, Tan’s was a bold face aggressive question, “When in the last 16 years has anyone come up with a medical advancement that the government will pay for that would have me walking?”

…He’s not wrong. There is a constant push and pull in Congress over stem cell technology that isn’t likely to end any time soon. Those stem cell trials that are performed on spinal cord injuries only use people with new injuries because they have the highest rate of success, and that’s necessary when you’re trying to secure funding. No one’s going to fund a project that doesn’t yield a high rate of positive results. And this principle works much the same with technological advances in equipment–the best trials are successful ones, the best injuries new ones. Tan isn’t going to qualify for these trials any time soon.

So what does this mean for us and the much needed letter. Well, we don’t know yet. We did get the letter stating his status in the 3-year medical review and we’ll submit that with the paperwork. It may work, but it also has the very distinct possibility of not working and that could be bad for us. We’ll know more on that in the future. What we do know is that Tan and I walked out of the Social Security office joking that his wasn’t disably enough for the disabled club, and that’s all we can do with the information right now. Humor is the best cure for all things after all.

As for our meeting with Vocational Rehabilitation, it came with both some exciting and optimistic news and a few knocks that will require some more thought and reflection–and probably research. As some of you know, this meeting was Tan’s Annual Case Review, which is simply a once a year get together with his counselor to discuss the career and education goals that he has accomplished within the year, ones that he still has to accomplish, and the services that he will need from VocRehab in order to accomplish them. For Tan, the agenda for the review was to talk about the van and his driving evaluation results from the beginning of the year, and his plans for self-employment.

We were prepared for the discussion about self-employment. VocRehab has grants and programs that work with individuals to help them start up their own businesses or other forms of self-employment, recognizing that for many people with a disability the need for a flexible schedule or personal assistants in order accomplish a job can be a deterrent in actually getting a job. It’s not easy to convince the program that self-employment is your best option. It’s about as complicated as asking a bank for a business loan. Just like a bank, these programs are investing their time and money in you, and you have a lot to prove. We came prepared with the first draft of a business proposal and armed with an arsenal of research. All those workshops with the Small Business Development Center that we’ve mentioned taking on our Facebook feed, that’s what they were in preparation for. The good news: Our counselor LOVED our business idea!!! While our proposal was to seek the use of many of the small business development services that the program has in place, such as working with business consultants that specialize in business start ups for persons with a disability and access to free or low cost printing service and the like, Tan’s counselor thinks that she may be able to propose funding for a full business start up or at least a business grant to pay for the equipment we need to start the business. This is a HUGE DEAL!!!

The next step is that our counselor will review the full business plan that we provided her and propose the plan to the program’s Director to allot funds for Tan to meet with their small business developer and begin the process of seeking start up funds through the program. Personally Tan and I will continue to work with the Small Business Development Center to flesh out the Financial Proposal to our business plan, and on getting the necessary registrations and licenses for business operation, and continue to work on raising start up funds. We have a pretty aggressive idea for starting up that we’re excited about and will be working with the SBDC to make it a go.  It’s a work in progress, but we’re on the right track and today’s news was better than we could have hoped for.

And then news about the van came…duh duh duuuuh…

So, after that all-exciting driving test that Tan took back in the spring–you know, the one with the video that made everyone cry–the driving specialist from The Shepherd Center left us with encouraging words that he would be passing Tan, making him eligible for driving conversion. The next step was for him to go home and write up his proposal for the necessary equipment that Tan would need. Today we learned of those results and the news is a bit of a hiccup. We’ve talked a little bit before about some of the costs of conversion break down, beginning with the price tag of $22,000 that covers only the lowering of the floor of a minivan. Today we learned that just the driving equipment for Tan will cost an estimated $100k, maybe a little more. This is just the driving equipment, not including the ramp, ez-lock system, tie downs, relocated seatbelts, etc. We have been given the green light that VocRehab will pay for this equipment, but there’s a financial obligation that we may not be able to handle. VocRehab requires that on top of purchasing full coverage insurance on the van, we also have to purchase insurance that covers each individual piece of driving equipment they install. This is very costly. It’s an expense that we didn’t know about and haven’t found in any of the research that we’ve done. Given this requirement, a driving conversion may be too cost prohibitive to us to pay for the required insurance on each piece of equipment. Just imagine what the cost of insuring $100,000 of equipment looks like!

What does this mean for Tan? It means that driving may not be an option for him simply because it’s too cost prohibitive for us to pay for the required insurance. VocRehab has put the information in our hands to decide which course of action we choose to go with. Personally we may have to re-evaluate what auto-adaptive modifications we deem are necessary and which ones we can do without. It certainly puts a restriction on Tan’s independence. We’ll continue to look at all our options and research to find some new ones. In the meantime, keep supporting us, keep sharing our message, and keep following us on here and on Facebook as we move towards starting up our business that will help us further our mission to provide mobility access for people with a mobility disability and continue to raise funds for a new handi-accessible van.


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