This gets me so upset I cannot think

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To some extent, this is a "first world" problem and I know there are people who wish they had any kind of a job and I am lucky to be working...but this is an aspie problem because it has to do with how I handle some of these things:

I am trying to get funding for a man with spina bifida to get a wheelchair lift for the back of his family mini-van. The process is supposed to take a maximum of 60 days, or 90 if things are really messed up. Instead, because he already had money in his budget to cover the cost, I tried a "shorter" process that should not have taken more than a couple of weeks at most,

Well, three months down the road, I am still fighting with the funding agency (a state agency.)

I have sent in the doctor's progress notes showing this man is an active patient if this doctor, his diagnoses and a short noted stating the lift is medically necessary. The agency says this is not enough. The Handbook states that the doctor's statement must explain how the lack of this lift affects his daily living. Apparently state officials cannot connect the dots between spina bifida, paraplegia, status/post amputation of his toes (all documented in medical documents) and whether or not he needs a wheelchair (and from there, a lift.) Moreover, because the electric wheelchair was given to him, instead of being purchased by the State, he also doesn't qualify??? Because "maybe he doesn't really need it if he didn't get it from the State. This is the same program that wants us to try to find "natural" and "generic" supports before using state dollars. So if we get a wheelchair donated, now he can't have a lift????

The list of complaints goes on...they want him to pay for an assessment by a ASE certified mechanic that the minivan will last at least another five years, but the mechanics won't certify that because how can they know for sure? Any car can break down at any time. This is a late model, low mileage vehicle. Also he can't afford the assessment. He lives on SSI and that barely covers regular costs of living.

These kinds of issues (there was another one last week, which completely drained me) prevent me from living my life. I obsess about how stupid the rules are. I obsess about how stupid the people are who make these rules and interpret them so literally. I obsess about the people I will contact to get this fixed. I understand the State has a responsibility to make sure funds are spent wisely and that money isn't spent on people who don't really NEED something. But it is obvious this is needed and the State has a LOT of documentation, including their own assessments, which shows that he does need this.

To some extent, it is good that I am this obsessed because most of the time, when I get riled up and make my arguments to the powers that be...in the Agency and also our state legislators, I get the person what they need. My success rate is very high.

The problem is that the emotional cost is very high and it puts my out of commission to work, enjoy life, exercise, play music. About all I can do when I get this upset is read or sleep. So this time, I am writing to WP.

This illustrates why some people oppose universal government healthcare. They are worried (rightfully so) that it will be a beaurocratic mess. When I was about to attend university, I recieved SSI. I had qualified for financial aid in the form of grants but when I first called the SSA to inquiry as to whether or not it would affect my SSI payments, I was told it would. It did not seem right to me that money for fees and tuition to further my education and hopefully get me a job that would get me off SSI and make me a tax payer should impact my SSI payments so I kept calling the SSA and pressing them on the issue. After the 9th call I got an agent that told me I needed to contact the PASS program and gave me the number, and I was then transferred and connected with a lady who said that some of my grants would not affected my SSI payments and some would if the funds werw not put towards fees and tuition. She also sent me a copy of the actual law on the matter and told me to send a photo copy of that to the SSA when I reported the grant money.

When I had medicaid, I needed straight medicaid because I used it as a secondary insurance. If I went to the doctor my primary insurance would pick up their portion and what was left over could be submitted to Medicaid.

When medicaid was contracted out to HMOs, I was automatically switched from straight medicaid to an HMO. This made it impossible to use the Medicaid as a secondary insurance because with hmos everything has to be pre-authorized. So if I went to my doctor and it was billed through my primary Insurance it couldn't be billed to the HMO because it wasn't pre-authorized.

I called and explained the situation to the new customer care department that didn't have the slightest clue what I was talking about. I got bounced around to five or seven different numbers until I reached a lady who told me I needed to send proof of a primary insurance. I sent proof and was told my medicaid would be reverted to straight medicaid. A few years later, I received notice that I had to pick a medicaid HMO. Again, I called and said I needed straight medicaid because I had a primary insurance and again I was told I needed to send proof. I told them I sent proof years ago (in fact medicaid has had proof of my primary insurance from the beginning). I was told there was nothing was in the system (I had confirmation from the USPS they received it years ago). I sent proof again, and was told it would be fixed.

Repeat a third time. This time I was told that the proof shows up on one screen but not another and the central office would have to fix that. Do you know when you try to call a government agency and you get put on hold for 2 hours and then disconnected? Apparently that also happens to meducair case workers when they try to call the central office. After a few weeks of this, I was finally told everything was taken care of again.

Repeat a 4th time!

Again I received the "You must choose an HMO or one will be chosen for you" No one knows why this keeps happening and there is no transparency within the organization. The "central office" is a black box of mystery and the names of the people in charge are unobtainable. They have an Ombudsman who they probably think solves all of their problems but is just as lost as everyone else and there is nothing above or below, just chaos and darkness.

So that's why I've always had a primary insurance.

Last edited by Chronos on 02 Apr 2018, 9:16 pm, edited 1 time in total.

I sympathize and empathize with you.

You're might live and work in a state which really is reluctant to offer services to people with disabilities.

I find it commendable that you care so much, actually. Though I wish you could enjoy your life more.

I'm thinking---maybe you might have to "bite the bullet" a bit, and get a little more into "networking." I don't actually believe some of "networking" is "selling out." I find it a pragmatic thing sometimes.

Though....I can understand, definitely, why you DON'T want to network. And I agree with you there.

But, sometimes, pragmatism might be the way to go.

I don't find the problem to be purely "first world," by the way.

If I don't have the proper-color shoelaces for my sneakers, and I cry about it, that would be a "first world" problem.

It's about "access for the disabled."

The person in a wheelchair wants to go to great places, just like a person who is able to walk. I think it's fair to give a "disabled" person the same access to things as a non-disabled person/

Chronos: SSI is a federal program and Medicaid is administered by the States and varies from state to state. There is a real push to have all Medicaid recipients be on HMOs. In my state, all Medicaid recipients must be on an HMO except clients of the developmental disabilities waiver. It sounds like your state has an exception for having to choose an HMO. If you don't have to choose an HMO, you have to call Medicaid each year and tell them you are picking Straight Medicaid and not an HMO. Usually there is a toll free number you have to call and wait on hold for an hour or more. Speaker phone is helpful here. Both Medicaid and Social Security have staff that are not knowledgeable because the programs are so complicated that the average person who answers the phone does not know about the exceptions. I deal with this all the time. I have to keep asking to talk to different people until I find someone who knows what I am talking about. When all else fails, I will request help from a legislator or even the governor.

Bureaucracy is terrible, but multiple payors is worse. For dental services, my clients may have as many as three different payors and no one dentist takes them all. You end up having to go to two or three dentists to get the work done you need. In another situation, it took over a year to resolve which payor was going to pay for the diapers for an incontinent adult with Down Syndrome. And it is essentially the same pot of money. Just a different line in the state budget fighting with each other.

Kraftie, I deal with the hassles all the time and I am very fortunate to have work that I love and I feel does people well. I probably didn't express it well enough, but my problem is just when I get so upset and then cannot enjoy my life or even get anything done that should get done. Drives me nuts. That's the first world part. I have a home, food, work, etc. A little frustration "should" not get me so flattened!! !

Actually, I do a lot of networking and at one point had the ear of most of the important people in the region. The people I had networked with knew that I was good at what I do and knew that if I was right, I would take it as far as it would go, so we skipped a lot of the intermediary BS. But there was a big turnover of positions and now I don't have a track record with hardly anyone there. So I have to go through the whole shenanigans again before they realize they have to take me seriously.

I probably need to be calmer and work at building up the network again.....

As someone who has had nightmarish experiences with the Medicaid bureaucracy, I also oppose government run healthcare and agree that it would be a bureaucratic nightmare. Heck, they might even decide that Aspies aren't worth it to society and just cut us off completely.

The bureaucracies of Medicaid (and social security for that matter) are horrendous. That is absolutely the truth. However, Medicare is a well-liked government healthcare program that everyone is eligible for once they reach a certain age, or if they get on SSDI.

That said, a huge number of people would be without any health care at all if it weren't for Medicaid. And these people are the most vulnerable of our society: the elderly, children and the "disabled."

I hadn't meant to start a thread on government programs. I was more looking for some support in dealing with the frustrations of same, which are an integral part of my work and sometimes overwhelm me.