Disabled Children and some of the trials they have to bear

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earlene

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I have two sons, one of whom is disabled. He is an adult and lives in our native state of California, USA. He used to be employable, but is no longer capable of maintaining a job, so depends completely on his disability check for living expenses and Medicare (administered in the state of California under the Medi-Cal program) for his health services.

Unfortunately he is also not capable of handling his own finances and requires a representative payee, which I have been for him for a few years. Prior to that it was my father for many years, my husband for awhile, various friends, and a professional payee (one who does it for a living and handles the money for several clients, for a monthly fee from each).

It is a responsibility I do not cherish, by any means, and I wish he could manage his own money. As I get older and his money troubles wax and wane, I consider that this is not something I can continue to do into old age, just as my father before me said about it a few years before his death. But it does help maintain some contact with my son which was something that was lacking for many years, so in that respect it feels like it offers us both a reason to stay in touch. Plus he actually asked me for this help (being his payee) and that is something he had never done as an adult; ask me for help. I felt it was a positive step in our relationship and it does seem as though we mended a lot of fences at that point. So thinking that I cannot continue in this role for much longer gives me pause.

Today he called me to ask if I would call his Medi-Cal worker because for some reason his Medi-Cal was inactivated and he could not get his prosthetic leg replaced, after several visits to get the mold made and so on and so forth. He was understandably desperate. Several months ago I got a letter saying his Medi-Cal would be suspended if such and such paperwork wasn't submitted by such and such date. I contacted him and we did that within the required time frame, and still this happened. So frustrating. It's no wonder he is always in crisis. Anyway, I told him I would call her and what I was going to say. I'm a Nurse; I know what to say to get action, but wasn't sure I'd be able to actually speak with her directly. I called his Medi-Cal worker and told her that I was his Representative Payee and understood that all the required paperwork had been submitted and yet he was still being denied care, so what did we need to do to get his coverage activated again and prevent hospitalization. Because that was where he was going to be if he doesn't get his prosthetic leg asap, and hospitalization is far more costly than a prosthetic leg.

What do you know? I got a call back within two hours assuring me that he can go to the doctor, get his prosthetic leg and that his coverage is now activated and will be 'in all systems' tomorrow. It's already in their system today, but it 'takes time' to get it into all systems. What's up with that? Don't the systems speak to each other? Why are they not using a Relational Data Base? Oh, well. Anyway, he can get his prosthetic leg replaced at last and that is a good thing.

I wish I could make his life easier. This is not the first time that he has called me and asked me to call someone to help make things happen that should not require my intervention. It is sad. Someday I will not be around as I expect he will outlive me and who will be there for him?
 

dixiedragon

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I am sorry for your troubles. I will keep you and your son in my prayers. It's very frustrating that those most in need are often those least able to navigate the process of getting aid. Do you have somebody lined up to be the next payee? If so, it might be a good idea to start working with them now so they know what's going on and can take over smoothly.
 

Susie

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I'll pray for y'all! That is not an easy road to walk. In some states (like Louisiana), people who MR, DD, or otherwise unable to handle their own business are assigned a case worker under Medicaid. That case worker keeps up with all the details of each person's case if there are no family members available to do so.
 

Arimara

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I'm sorry for all that trouble you're going through. It's great that your son can trust you to help him out but is it possible that he could learn to manage his finances? I'm only basing this question on my personal experiences and I know it's tough to learn. I'm still prone to get flustered with money but it happens a lot less these days.
 

earlene

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Thank you, I have talked to my brothers, but they're all older too, so not the best choices for that reason. Talked to my other son about it in the past and he probably wouldn't do it, it seems.

I do wonder if it's possible for him to take some kind of class sponsored by Medi-Cal or some social service agency that would help him learn to manage his own finances sufficiently. I should look into that. There must be something like that available.
 

Arimara

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If he gets SSI, they might offer some info about that. It might take some calling around and what not but unless he had someone else who would genuinely care about him and his wellbeing who isn't as old, things aren't looking to bright for him should anything happen to you.

Do you know of any advocacy groups for the disabled? That might be an option too.
 

GingerL

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I worked for Human Services in a small California county for a number of years. One of the agencies that make up Human Services is the Public Guardian. They handle the finances of people who cannot because of mental or physical disability, and who have no one else who can help them. The Public Guardian in my county paid their clients bills and helped with public assistance paperwork (Medi-Cal). You might contact the Public Guardian for your son's county and ask about their services - they may be a resource for your son when you're no longer able to help.
 

dibbles

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I have no advice, but I will keep you in my thoughts. I do hope your relationship with your son continues to grow in a positive direction. It must have been difficult to have been estranged from him.
 

Steve85569

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First:
You are helping your son. A lot.
Next:
You are preparing for his future when you are no longer able. You have time. Take the time and enjoy what you can of the relationship with your son.

Finally:
You have been given some good information to follow up on. Remember you have the ability to do these things that your son cannot and the other son will not.

You are being God's angel for your son.
I admire you for doing what you are doing and preparing for the future.
 

earlene

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Thank you. These are very encouraging words. Yes, my son has actually used a disabled people's advocacy group a couple of times to help him with some issues in the past. That is a good suggestion. So is the Public Guardian's office.

And thank you for the reminder to enjoy our time while we still have it; that is a lesson that bears reminding.
 

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