View Full Version : Political Activism for AD/HD


garykelly
06-16-08, 01:47 PM
Apparently, from viewing many threads, this particular subject has lacked the proper attention it deserves, since there have been no post in the last 90 days.

The apparent lack of interests in or knowledge about this particular area concerns me. There are many setbacks that sufferers of AD/HD have that result in severe financial, and sometimes legal or litigious, consequences. Unfortunately, AD/HD people have no recourse, but to suffer the consequences and keep trudging onward because this disability is not, to my knowledge, as well protected in the areas that need to be addressed.

I am a former state legislator and I have AD/HD. I'd like to hear your thoughts on what laws would better protect/help a person with AD/HD. I'd also like to know what various states are doing to create a public awareness of AD/HD to the public (campaigns, commissions or boards, etc). If you have any thoughts, let's help each other out in this important, albeit, neglected area.

In addition, if you have any questions about legislative processes that may aid the cause, feel free to contact me. I'll do my best to answer questions and help you.

Tara
06-17-08, 04:59 PM
Are you involved with CHADD (http://www.chadd.org) or ADDA (http://www.add.org)? Both organizations have been working very hard to support people with ADHD. They can always use more help though. Are you aware that September 17, 2008 is national ADHD Awareness Day?

It sounds lile you would be a great asset both of these organizations and the ADHD community!

Retromancer
06-29-08, 02:05 AM
Um the financial implications etc. is one good reason why there is little activity on this subject. So many of us are just trying to make it through the day. It's hard to to see the larger picture.

And the larger picture is? As far as I am concerned AD(H)D is a disability and we that have that diagnosis are part of the larger disability rights struggle.
Needless to say there are those who have the diagnosis and those in the disability rights movement who would beg to differ...

ResilientFighter
07-16-08, 06:55 PM
Medicaid should cover all types of ADHD assistance Psychotherapy, neuropsychological assessments, medication management, coaching, biofeedback, relaxation training, and more.

It should also cover medications that are not alternatives to the real brand name meds.

I can't hold a job long enough to qualify for health insurance. How do these ADHD doctors get patients I have no Idea. Some of the experts don't even take health insurance.

So if you have a disorder that doesnt let you hold on a job why are these doctors charging outrageous amounts of money for 1 hr consultations? I'd have to rob a bank...

Dr. Adler in NYC.... OUTRAGEOUS

blueroo
07-16-08, 07:41 PM
Medicaid should cover all types of ADHD assistance Psychotherapy, neuropsychological assessments, medication management, coaching, biofeedback, relaxation training, and more.

It should also cover medications that are not alternatives to the real brand name meds.

I can't hold a job long enough to qualify for health insurance. How do these ADHD doctors get patients I have no Idea. Some of the experts don't even take health insurance.

So if you have a disorder that doesnt let you hold on a job why are these doctors charging outrageous amounts of money for 1 hr consultations? I'd have to rob a bank...

Dr. Adler in NYC.... OUTRAGEOUS

I feel a need to point out one thing. You can climb a mountain without arms, ski without legs, and hold a job with ADHD. To say that it's hard is an understatement, but don't admit that ADHD prevents you from holding a job because there are millions of us who can show you it isn't true.

After watching a few episodes of The Deadliest Catch, I'm pretty convinced that most of the Alaskan crabbing fleet, from captains to greenhorns, is composed of people with ADHD. :)

blueroo
07-16-08, 07:51 PM
Apparently, from viewing many threads, this particular subject has lacked the proper attention it deserves, since there have been no post in the last 90 days.

The apparent lack of interests in or knowledge about this particular area concerns me. There are many setbacks that sufferers of AD/HD have that result in severe financial, and sometimes legal or litigious, consequences. Unfortunately, AD/HD people have no recourse, but to suffer the consequences and keep trudging onward because this disability is not, to my knowledge, as well protected in the areas that need to be addressed.

I am a former state legislator and I have AD/HD. I'd like to hear your thoughts on what laws would better protect/help a person with AD/HD. I'd also like to know what various states are doing to create a public awareness of AD/HD to the public (campaigns, commissions or boards, etc). If you have any thoughts, let's help each other out in this important, albeit, neglected area.

In addition, if you have any questions about legislative processes that may aid the cause, feel free to contact me. I'll do my best to answer questions and help you.

Gary, I've been thinking about this subject off and on for a while now. There are millions of undiagnosed adults suffering in the United States alone, and it hurts them, their employers, their communities, and their families. I would love to see an organization for the advancement of ADHD awareness adopt a political voice and represent ADHD interests in our government. The NRA boasts 4 million members. There are over 8 million estimated adults, 4.4 million diagnosed children, and millions more undiagnosed children with ADHD in our country. Surely that is a population that should be attended to.

Hopetowin
07-26-08, 01:55 PM
I agree 100%! However, this may be very difficult because how do you distinguish the true ADD's from someone who may be caddy enough to fake the symptoms for economic benefits.

In the meantime, what options are available. I have not been officially diagnosed but I have 99% of the symptoms. I have been suffering from depression since the age of 10 and I am now 58.

I am scared to death because the situation is getting worse and I don't know of anyone here in Columbus, Ohio who can help. I truly feel that I am losing my mind. My doctor seems to think that I am just overwhelmed as a result of having too much on my plate as after my mother passed, I found myself in a position where I am dealing with 4 different attorneys on situations that were unavailable.

I have amassed for the second time $2,000 in parking tickets, speeding tickets and my finances are a mess. I can't focus or remember anything in the short term.

My meds (Adderall) makes me more depressed and I cry more. Recently he put me on Vynase? and I am extremely anxious.

I have made such a mess and I can't get anything done. I jump from one project to the next without finishing anything. I am so sick of myself and I am afraid I am going to lose my job. My husband has divorced me, and I have lost all of my family...the end is so very inviting. I can't stand me anymore. I get organized only to find that I am not organized.

What can I do?????

blueroo
07-28-08, 08:34 PM
Why try and distinguish authentic ADHD and fake at all?

Ariosto
07-29-08, 07:16 AM
I think Gary has an excellent idea. It's true that a couple of excellent organisations (such as CHADD) already exist and are working on behalf of people with ADHD, but it can only help get more political recognition to have more organisations and more people involved!!

A group of us adults with adhd are doing just that (raising political awareness) here in the UK.

One reason why political awareness may not have been getting all the attention it needs is because it's hard enough keeping our own daily lives together without having the extra work of running a campaign. But it can be done, and its very empowering!!

capagg
08-06-08, 08:33 AM
Thanks Gary for bringing this topic up.

I would think if political/legal change were to turn favorably in our direction we would need to identify the disadvantages common to all persons with ADD. The DSM indirectly does this, but it does not serve an actionable purpose but rather it serves an accusational role which is further perpetuated by circumstancial and antedotal reporting from individuals. In other words, our exact disadvantges are difficult to protect legally because our disadvantages are not existentialy unilateral, therefore unactionable.

I have ADD becuase I am accused of having ADD by the DSM (Identification based on results), and the results are because of circumstances.

As most of us know, circumstances can change, therefore I think we need a de facto definition/opinion of ADD. And if ADD were to be formally protected, the law would require it.

ADDdiva
09-29-08, 09:37 PM
Thought I would throw in my 5 cents:

ADD affects people more than most realize. To bring this point home, I will illustrate a few embarrassing events in my life in the last couple months.

1. My bank is making a fortune off of me. Right now, my account is $500 in the negative...why? Because I forgot to write a simple transaction in my register. Off of that one transaction, the bank just made $350. In my financial history, I think I have paid around $10,000 in bank fees. My bank just doesn't understand that I forget to write things in my register, so they label me as a person who abuses check-writing privileges.
2. Usually, I pay my bills on a certain day of the month. The month of June was no exception. I paid my bills and was absolutely thrilled that I had more money left over than I had planned for. I went about spending my money on different things as a reward for following my budget. About halfway through the month, my electricity suddenly went out. Irate, I called the electric company. They explained to me that I hadn't made my payment, but I insisted that I had...but I couldn't find the receipt. A sinking feeling filled my stomach as I realized that I had not paid it. City welfare could not help me because I had had enough money to pay the bill. It was a good thing my landlady was so forgiving. She allowed me to take it out of my rent and catch up the balance in the next month.
3. I am working with Voc Rehab to go back to school and finish my education, but because of my ADD, I sometimes get distracted and don't make it to my appointments on time. This organization, that is supposed to assist disabled individuals by helping them to WORK WITH their disabilities, told me that if I was late again or if I missed an appointment again, that they would no longer help me.

There are so many people who love to poke fun at ADD and say that it is all in our heads. We are treated like lazy people who don't try hard enough, even the very people who are supposed to be aware of our problems and are supposed to be helping us to overcome problems.

How about some laws so that financial companies can't take advantage of us? Or some awareness training for government organizations? That would be extremely helpful.

Retromancer
09-30-08, 02:03 AM
I have some similar stories to tell with my state's DVR system. Unfortunately part of the problem is defining just what ADD is -- and is not. As far Voc Rehab is concerned it may expedient to explain it to your caseworker as a type of learning disability. I think they may be more ready to accomadate issues such as time management within this framework...


3. I am working with Voc Rehab to go back to school and finish my education, but because of my ADD, I sometimes get distracted and don't make it to my appointments on time. This organization, that is supposed to assist disabled individuals by helping them to WORK WITH their disabilities, told me that if I was late again or if I missed an appointment again, that they would no longer help me.

There are so many people who love to poke fun at ADD and say that it is all in our heads. We are treated like lazy people who don't try hard enough, even the very people who are supposed to be aware of our problems and are supposed to be helping us to overcome problems.

How about some laws so that financial companies can't take advantage of us? Or some awareness training for government organizations? That would be extremely helpful.

Zerbinetta
10-28-08, 06:36 PM
OK, Hopetowin, when you say "distinguish the true ADD's from someone who may be caddy enough to fake the symptoms for economic benefits," which economic benefits would those be, exactly? And how would one go about faking the symptoms, anyway?

Capagg, I'm sorry, but I could make head nor tail of your post. What were you trying to say?

capagg
10-29-08, 05:02 PM
Zerbinetta, ADD is diagnosed by a history of behaviors. The DSM lists these behaviors.

Our eventual diagnosis of having ADD is caused by our behavior interacting with the environment. So two things are required for an ADD diagnosis; Behavior and Environment (work, school, home, etc...) The environment requires our behavior to perform in a certain manner, if we don't we are deficent. All of these environments have one thing in common: they all require an ability to sustain.

If however I am in an environment that in order to survive requires that I be impulsive, seek new things, perform well even when everything around me is changing, lose stuff, forget stuff. If this is what I had to do, then I would not have ADD. Becuase my behavior is suited to that environment.

So that's why I say ADD is diagnosed based upon circumstances, which is just fine but, all of us have different circumstances, so our ADD can have the appearance of having different manifestations. That's why form the outside looking in at ADDer's we see a boy who won't pay attention in math class, but spends hours upon hours playing with lego's which leads to an inconsistent perception. The realtiy of it is that the circumstances have changed for the boy allowing him to sustain.

So imagine if the DSM said this instead: In order to be diagnosed with ADD the person must have a brain glucose deficency of at least 50% of what is considered normal. (Whatever that is) And is not attributed to any other known causes.

So if that were the case, then we have a condition that remains the same no matter what environment we find ourselves in and our diagnosis no longer becomes circumstancial, but de facto.

One of my personal issues coming from ADD is that I like to use big words, not becuase I want to sound smart but becuase I find that the more precise I can communicate the faster I can get it done! Please forgive!

ferdinan
10-30-08, 12:37 AM
Apparently, from viewing many threads, this particular subject has lacked the proper attention it deserves, since there have been no post in the last 90 days.

The apparent lack of interests in or knowledge about this particular area concerns me. There are many setbacks that sufferers of AD/HD have that result in severe financial, and sometimes legal or litigious, consequences. Unfortunately, AD/HD people have no recourse, but to suffer the consequences and keep trudging onward because this disability is not, to my knowledge, as well protected in the areas that need to be addressed.

I am a former state legislator and I have AD/HD. I'd like to hear your thoughts on what laws would better protect/help a person with AD/HD. I'd also like to know what various states are doing to create a public awareness of AD/HD to the public (campaigns, commissions or boards, etc). If you have any thoughts, let's help each other out in this important, albeit, neglected area.

In addition, if you have any questions about legislative processes that may aid the cause, feel free to contact me. I'll do my best to answer questions and help you.


Whenever I get back to the US, I am very interested in getting active with CHADD or ADDA. I feel that this is not taken seriously enough. I feel offended by the amount of people who get prescribed medications and do not need them. I am offended by the ADD jokes, and how it is not seen as a serious problem. In my opinion, It feels like I am handicapped without treatment.

ferdinan
10-30-08, 12:49 AM
Why try and distinguish authentic ADHD and fake at all?

Because I personally dont want to be put in that same category as the "weekend ADDer", or whoever "has ADD" whenever it is convenient for them. This is an actual condition, an actual struggle, it is not make believe. I feel strongly about this, I don't have the option as the "weekend ADDer" to only take there medicine whenever its test time, if I dont take my medicine I am here, but I am NOT HERE on this planet.

blueroo
10-31-08, 03:49 PM
Because I personally dont want to be put in that same category as the "weekend ADDer", or whoever "has ADD" whenever it is convenient for them. This is an actual condition, an actual struggle, it is not make believe. I feel strongly about this, I don't have the option as the "weekend ADDer" to only take there medicine whenever its test time, if I dont take my medicine I am here, but I am NOT HERE on this planet.

Stop measuring yourself against other people, and the problem solves itself. :)

ADXP
12-10-08, 05:13 PM
Any legislations on the Federal level at all ?
Let us revive this thread.
I am gathering data in NH
for Voc Rehab.

I am so disgusted with this
agency.

Anyone from NH wants an ally
pls. email me.

Retromancer
12-10-08, 11:27 PM
The sad fact is that many US members of this forum are be in fact eligible for VR (Vocational Rehabilitation) services and don't know it. These people I would encourage to actually contact their state's VR agency. As far as you and I -- and a number of people I know -- are concerned we need to be better served by our respective agencies.

One of the many VR issues that I am concerned about is just what services in fact they will pay for. There is a paucity of written information on this. It appears to be up to the individual caseworker or their immediate superior to make this determination. For example in the absence of medical coverage is medication covered? In my experience the answer is yes, no and now yes but possibly not for long...

I am all for the sharing of notes and I am looking for links to any relevant advocacy organizations and/or support groups that may be out there.

Any legislations on the Federal level at all ?
Let us revive this thread.
I am gathering data in NH
for Voc Rehab.

I am so disgusted with this
agency.

Anyone from NH wants an ally
pls. email me.