Special Needs Trust

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This is a difficult post to write. I had been sitting on it for several months, trying to decide best how to convey the emotions I am feeling.

A few weeks ago, I was asked by a stranger if I had been in a car wreck, as I was wearing my neck brace. I replied that I was in a train wreck, and I was distracted by another person before I could finish my thought. He later asked where the train wreck took place, and I apologized for misleading him, and said I should be so lucky.

When I was first diagnosed with ALS last spring, I was overcome with grief, and spent many hours over the next month sobbing and screaming in rage. Eventually, life took over again, and I set all that aside for a while. After all, I still had two young daughters to help raise.

My Family

Most of my initial fears have come to pass. I remember the initial struggles lifting Sabina, just a few short months after her birth, before we even knew that there was anything close to serious going on. By January of last year, I was not even able to pick her up at all. Fortunately, she began crawling soon after, and had figured out how to crawl into my lap when she wanted me to hold her. I am so happy now when she climbs up on my lap to have me read a story to her or to watch a YouTube video.

And Ashlin has been very understanding and helpful through this whole process. As I have been unable to give hugs for several months, she came up with a method where she pulls my arms behind her back. I just about cried the first time that she did that. The last couple of months have been difficult, as I am no longer able to turn the pages of books when I read to her. At first, she went through a period when she didn’t want me to read to her at all. But then she spoke with Gwen about her feelings about it, and now she turns the pages for me.

Sadly, however, I know that the worst is yet to come. I will be visiting with the ALS clinic soon in order to get a power wheelchair. At the same time, we need to expand our bathroom to accommodate it, and put in a ramp in the back. And yet, that transition does not feel particularly big for me. Much more difficult has been the fact that I need artificial ventilation in order to breathe at night already. Or that I am unable to play frisbee anymore.

Aaron Welch with Advomatic recently set up a Special Needs Trust in my name. This unique trust allows us to use funds contributed by outside sources (we are legally not allowed to contribute to it), while protecting my eligibility to receive care-giving assistance through the state. The funds can be used to support my needs beyond what I will eventually receive from Medicare/Medicaid.

Basically, at some point down the road, I will be on disability and eligible for Medicare. The good news is that this happens almost automatically for a patient with ALS, due to some lobbying in the last couple of decades. As my needs increase, however, I will need more care and will need to become eligible for an attendant care program in PA, for which the income and asset allowance is almost nothing.

If and when I choose artificial, invasive ventilation, I will require 24 hour care. At that point, I would also need to be Medicaid eligible. This is where things get extremely challenging financially. For example, with attendant care / Medicaid, not only do I need to be basically destitute, but the state looks back over 5 years, and if they see that I have given any money to anyone in that time frame, they assume that I am trying to scam them, and dock the time, adding several months or more to the time before I would be eligible.

Based solely on the odds, there is a 50% chance that I will die in 1 to 2 years, although it’s a little more complicated than that. There are two predominant flavors of ALS: bulbar onset (the brainstem) and limb onset. Mine is the limb, which makes it only slightly more likely that I may live for another 3 or 4 years instead.

I want to point out that I am doing everything humanly possible to beat those odds. When they talk about the life expectancy of ALS patients, however, they are really talking about the "survivability", which is the point when a patient would require invasive ventilation to survive. Most of the 10% who will go on to live a decade or more have reached this point and are locked-in as well, trapped in their completely paralyzed bodies.

We have done what we can to protect what assets we do have. We have been consulting with an attorney as the information is very complex and we want to protect the future for our children as best as we can. We know that major purchases are down the road, such as medical and communications equipment, home modifications, a wheelchair, and an accessible van, all of which will be in the tens of thousands of dollars. The cost to support a patient with ALS in the later stages can run easily up to $100,000 a year or more. The funds in the Trust can help support me while I am alive. After I die, the funds remaining in the Trust will go to my wife, Gwen, to help raise our children.

For those who wish to contribute, we have set up a bank account for the Trust. We have set up a PayPal account as an option to contribute. For a one time donation, click on the Donate button. To make a recurring monthly donation, you can select the amount you wish and click Subscribe. Alternatively, we can accept checks for the Trust; contact me for more information if interested in sending a check.

One Time Donation

 

Monthly Recurring Donation

I am angry at this stupid disease. I know from my time with Elisabeth Kubler-Ross so many years ago that this is a natural part of the grieving process, and that eventually I will enter the acceptance phase. I even look forward to that.

But my daughters, Ashlin (8 years old) and Sabina (2 years old), will not have the benefit of the acceptance of my death when it happens. I am being robbed of my time with them, of watching them grow up. It is hard enough to know that I will most likely not be around to watch Ashlin graduate. To know that Sabina will most likely not have any more than a fleeting image of her father from early memories makes me cry.

To add insult to the injury, I am quickly losing my ability to participate in their lives, even now, becoming simply a spectator. What I would give to be able to pick up a frisbee and toss it to my daughters.

I want to thank everyone for all your ongoing support and care. This slow-moving train wreck is more than any family should have to endure.

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Anonymous's picture

Wishing You all The Best!

Hi Aaron,

We are wishing you all the best from Denver CO. It is a sad story you have shared with us, but we are glad to here you are on your way to recovery. Hopefully more people will hear your story and be given an opportunity to help. All the best.

Roger's picture

In case you haven't heard...

Hi Aaron,

Thanks for all you've done so far for the Drupal Community, and I'm glad there is a way for us to give back, even if it is only a drop in the bucket.

I know your path is not easy, and that one of the challenges is that many will offer all kinds of unsolicited advice and information that implies "you should..." or "you should have...." (seeing some of that here already). At the risk of being one of those unwanted voices, I just wanted to make sure you've heard about a film I recently viewed: Jason Becker: Not Dead Yet.

It's a remarkable story about one man living with ALS - I don't mean to suggest it as a prescription or answer, but wanted you to know it exists.

Best of Luck,

Roger

Anonymous's picture

Hi Aaron! I'm using media

Hi Aaron!

I'm using media youtube module. Really like it. But I have a problem and I was wondering If you could help me.

I'm from Uruguay. Here there is a thing called OLPC (One laptop per child). It means that every child from any public school is given a laptop provided by the goverment.

I'm building educational site that provides learning videos for children Games that live far away from the cities.

The thing is that YouTube plays my videos on a 360p quality. And this quality doesn't work on the OLPC laptops, I need a lower quality by default. I can change it manually form the Arab youtube enbeded player. But this is not a solution. I need it to be by default.

I know this is not really related to the module and I'm sorry to bother you. But I've been searching arround for a week and nothing worked. May be you can give me some idea.

Thank you very much.

David Peterson's picture

All the best from Australia.

All the best from Australia. I am a father and have a young family as well... I can't even imagine the pain you must feel towards not being able to interact with your family in the ways you want to. Stay strong and know that your family will always love you.

venkat-rk's picture

Community for ALS

Aaron, I came across this post on AgeofAutism about a self-support community for ALS that has a web site:
http://www.patientslikeme.com/

You may also like to check out this article about ALS patients trying out a new medication all by themselves.

For the sake of you and your family, I really wish something good will happen soon to help you improve or get cured.

Tehyun Kim's picture

You are a great man

I am a new guy on Drupal world. But, soon after I got my foot on the Drupal, I easily found your footprints everywhere on the site. Today, I, with no particular reason,
just wanted to know a little more about you, so I visited this blog and met you and your lovely family for the first time on the "media."

I know there would be nothing that a total stranger can say to give you just a little bit of comfort, but I would like to say to you that your works are great, I wanted to know you better and was expecting to meet you personally in Drupalcon someday, you and your family should be much stronger that you imagine, and I will pray for you...

from Korea with all my respects,

Tehyun

blazindrop's picture

My thoughts are with you and your family

Aaron,

I'm so sorry to hear about your condition and was just touched by your story. I have a daughter that is turning 17 months in a few days and I cannot even imagine a world without her. Thank you for all you have given the Drupal community and I hope my donation is followed by many more in the community. Best wishes to you and your family!

Mike, a/k/a "blazindrop"

Kappaluppa's picture

Prayers & best wishes headed your way...

Appreciate you sharing your story... how wonderful to have your loving family by your side!

Thanks for all you've done for the Drupal community, and thanks for letting us do a small bit for you too.
K

Bob H's picture

I saw this on HN, the most

I saw this on HN, the most common way of 'giving' these days is to subscribe to some large organisation which spends money on advertising and mailing. So more recently I have started to be much more selective about my giving but making the effort to be more generous than I have ever been. So, when I see somewhere I can make a difference I try to do so, reading your story I realised that even with a modest contribution I am able to make your life and that of your family just a bit easier. I tried Drupal, but I didn't get on with it, but Drupal isn't the issue here your health is.

I wish you and your family as easy a life as possible under the circumstances.

Bob

Dries Buytaert's picture

Stay strong

Aaron,

As many others have stated, thank you for sharing your story. I can only imagine the physical and emotional pain you and your family are going through, but I hope the support of the community brings you some comfort. Acquia and I have made a contribution to help support you and your family. I can’t thank you enough for the tremendous amount of work you have contributed to Drupal over the years.

My thoughts are with you!

--
Dries Buytaert
Founder and project lead Drupal
Chief technology officer Acquia

aaron's picture

Thank you Dries for your

Thank you Dries for your donation and your words of support. And thank you most of all for sharing your vision with the world; I am so proud to be part of the Drupal community, and hope to continue contributing my share for hopefully years to come.

Stay strong,
Aaron

Ronald's picture

Thank you Aaron

Aaron I can only imagine how difficult this is to write but I just want to say thank you for doing so. It is an immensely valuable lesson for all of us and another gift you are just sharing with all. Thanks.

Karen Lopez's picture

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jeff's picture

One small donation on the way

One small donation on the way (thanks to Jesse Noller), appreciate the opportunity to be able to help (if only in some tiny way), thinking of you and your family.

Anonymous's picture

Support and hope

Please visit the site of an ALS survivor:

http://ericiswinning.com/

I wish you hope, inspiration, and a love of every day you have.

Heather's picture

Thanks for your contributions!

Thanks for your contributions to the Drupal project, and the community. If it wasn't for you, and contributors like you, I wouldn't have my job today.

And thanks as well for making it possible for us to help you and your family.

Jessica M's picture

Participating in Child Raising

Hey Aaron,

One idea for you: maybe you can pre-record videos that you'll have released on each of your daughters' birthdays, or on big events (like graduation or marriage).

On Ashlin's wedding day: Ashlin, I'm so happy for your wedding! You're so lucky, your husband is an amazing guy. Give him a big hug for me, tell him I wish him the best.

Or you can even pre-record videos for when they're sad or in need of fatherly support. What if Sabina is sad about a bully from school? What if Ashlin got straight As and you want to give her a big congratulatory message? Likewise, what if Ashlin got a C in social studies? You'll have a video telling her she needs to try harder, and that you're watching her every move.

Think of every potential event that will require your presence. Gwen will make sure that your videos reach your children.

I wish you the absolute best,

- Jess

Anonymous's picture

Hey man, speaking as a random

Hey man, speaking as a random person on the other side of the world, I feel for you, I didn't understand at fist what disease you were talking about, but what you describe about your family and daughters ... I don't know, at least writings like these will count. You know that 2yo daughter of yours will at some point wonder what her father was like, and given nothing gets lost on the Internet, I'm sure one day she will understand the terrible confusions you are going through and then, 10 years later she'll understand it even better maybe. You are leaving things about yourself right now today. It's a terrible thing that you won't be there, but that's you, and what you leave is for them. Good luck.

Anonymous's picture

As a father to two young

As a father to two young girls, my heart is absolutely broken for you and for them.

Kristijonas's picture

Aaron, It is incredibly

Aaron,

It is incredibly depressing to hear that a husband and a father of two beautiful girls is being robbed of his life. I wish you to fight through it and stay strong.

I may be naive, but perhaps there is still hope. You see, while traditional medicine and traditional treatments might have no cure to this disease, perhaps there is another way.

For the past 2 years, I have been treated using alternative medical treatment solution, which, with the help of the computer, thoroughly scans one's body for abnormalities and diseases. When the initial scan is complete, the summary is presented which is then interpreted by a doctor, who prescribes necessary medicine and suggests further treatment. The secondary scan is the initiated, however then, the prescribed medicine is then scanned by the same equipment. A doctor can then immediately see, how efficient the prescribed medicine will be against the disease.I know quite a few individuals who were ridden by serious illnesses and as a result of this treatment, they eventually recovered.

Now obviously I don't know if such treatment method is available in the US, but I know it is available in my home country, Lithuania. I apologize that I cannot provide you with the exact name of the treatment - I simply never paid attention to the name. However, I could provide you with the contact details of the doctor, who specializes in such treatment. I assure you, she is a great specialist, people all over the world come to her for treatments.

Stay well, Aaron. My thoughts will be with you.

Sincerely,
Kristijonas

Paul's picture

Words ...

I wish there was something elegant I could say to convey how much empathy I have for you, Aaron.

I have a tremendous amount of respect for you and your courage to reach out to us (ironically through a Drupal driven site).

God bless you & your family.

Cary Gordon's picture

I really think that folks who

I really think that folks who give as much of themselves to a community as you have given to Drupal, should get immunity -- from everything.

Has anything been done with ALS and gene identification? I know that there has been a lot of promising developments in the cancer realm that have been buoyed by the drop in sequencing costs.

Elijah Lynn's picture

Stick in there bud

Stick in there bud, be careful what you let doctors feed into your mind. I highly recommend grabbing a copy of the book "Eat to Live". You can do this!

http://youtu.be/qX9FSZJu448

JS's picture

I haven't yet had a need to

I haven't yet had a need to use Drupal, but I came across your story on HN and chipped in a small amount. My thoughts are with you.

Ron's picture

More support than you know!

Aaron,

I can't begin to understand what you are going through (or what you will)... especially with 2 young kids. I have 3 myself and brother, I can empathize with your grief and anger. Thanks for having the courage to share your story and reach out.

Just remember that while you may not hear from all of us, there are tons of fellow drupalistas, coders, developers, and humans who are going to be thinking of you and sending you positive vibes. Consider me one of them.

best regards,
Ron Northcutt

"Receiving with grace is beautiful. It allows someone the opportunity to give, and blesses both giver and receiver. ~ @Zen_Moments"

Ryan Ye's picture

Hi Aaron, I have neer used

Hi Aaron,

I have neer used Drupal before but I support open source and you too!

I had been through your kids' situation before and overcome it. I become even stronger. I am sure your kids will be able to overcome! Please be strong!

Ned's picture

My Dad

Aaron - It's almost a year since we lost my Dad to ALS. I almost didn't comment, since I have to admit that I don't have some giant piece of life-wisdom I can share with you or your family. But I can say this: his family his still here. And we love him and think of him all the time, and he continues to influence our lives and who we are every day. You have a tremendous amount more to teach us all in the time you do have left! Take care, Ned.

Stefan's picture

thank you

Thank you for sharing your story, it's a great show of strength.
I know it may sounds stupid to say but: do not give up.

SURE to see you around for many many years to come,
from Italy,
Stefan

Jesse Noller's picture

I am sorry.

I am sorry this is happening; I am beyond words. I don't know you - and I've never used Drupal - but none of that matters. I've done what little I can to help.

aaron's picture

Wow, that is so generous.

Wow, that is so generous. Thank you for your support! You are a kind spirit.

Bob Kepford's picture

Aaron, Thank you. Thank you

Aaron,

Thank you. Thank you for sharing this very personal part of your life and for all of your contributions to the Drupal project. I hope to have to chance to thank you in the person in the future.

aaron's picture

And thank you for your words

And thank you for your words of support.

Mostafa's picture

Hi from Iran

Hi, very sorry to hear that but the Drupal is great in terms of community. because of the US sanctions (of Iran) I can not transfer money but I do wish all the best and I hope to see you doing all good work you've done till now.

aaron's picture

Thank you so much. It is

Thank you so much. It is amazing to see just how widespread the Drupal community is, and it brings tears to my eyes to see the wellspring of support. I apologize for my government's despicable actions against your country, and hope that our governments will eventually come to learn the peace that is desired and practiced by their peoples.

BryanSD's picture

Spread the word or not?

Hey Aaron,

I'm sure there are people from other CMSs and open source communities that would have also interest in hearing your story and contributing. Are you wanting to keep word about your Trust fund and your battle with ALS within the Drupal family or would you like some of us to spread the word out even further?

-Bryan

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.