How do I write a will and help my mentally ill son become independent?

December 29, 2013 12:56 PM

I am a woman in my early sixties and have a son with pervasive developmental disorder (Aspergers and bipolar) in his early thirties who lives with me. Although I am currently in good health, I am aware that there is an urgency to write a will which I have been putting off due to anxiety about the situation. I am unsure of how to go about doing this. Details inside.

I have a son in his early thirties who lives with me and suffers from bipolar disorder as well as pervasive developmental disorder. He is on disability. He has made a lot of progress in life and is now stable which is a blessing, considering the fact that he was suicidally depressed just a few short years ago. He now has a part time job, drives and can for the most part care for his basic needs (I do have to help him get out of the house sometimes, and remind him to take his pills, of which there are many).

But he is currently dependent on me in many ways. I cook for him, and if I am not around he often eats out. If I died suddenly, he would not have a clue about running the household (paying bills, etc.) I also help him take care of his medical insurance and disability paperwork. Maybe I am coddling him; he is not stupid in any way shape or form and can carry on intelligent conversation when he feels like it. I would like to teach him these things and do try to, but it is a slow process and overwhelming, so I get anxious. He does not take much initiative to learn, and seems to forget what I tell him right away. Besides his part-time job, he is rather reclusive and stays in my house spending the majority of his time on solitary hobbies. He does not seem to take me seriously, and does not seem to take much interest in improving his lot in life. I feel there is a sense of complacency in his situation since I take care of a lot for him and comfortableness (maybe for me a bit too) since things are going well "now," but he does not seem to realize that someday I will be gone and he will be thrown in the deep end if things continue the way they are. And I do not know where to start in rectifying the situation. He has a case manager and has started the conversation about possible housing for himself, but he goes to these meetings and comes back from them with no progress having been made. I offer to go with him, and he gets angry and accuses me of "babying" him.

How do I go about having a will written with him in mind but without spending tons of money on a lawyer? Or is a lawyer necessary in these kinds of situations? And how do I start preparing him for a life on his own? I feel like things will stay as they are without any initiative from me, and I don't want him to live in poverty in his older years. I don't know where to begin on either of these points due to anxiety. I also have another son who would be executor of the estate but he does not live in town. I don't expect him to take care of his brother, but I know that he worries about this situation as well. I have always put this off because I am overwhelmed thinking about it but I need to at least get started. I realize I could do a will online but want to make sure my disabled son's portion is not just given to him but distributed monthly perhaps. I am worried that he will spend it all right away. There is not a lot of $ being left right now and the house is in very bad shape so would probably be tough to sell if at all.

Assets at this point are around $150,000-I have 2 annuities. Any advice would be very much appreciated. It would be great if my son could stay in the house but there is so much he would have to learn. He has stayed alone while I have gone on vacations but the max was 5 days. I worry most about him paying bills and just caring for the house which is a big job.

posted by anonymous to Law & Government (17 answers total)

Could you ask his case manager for local resources that provide support for people like your son living on their own? I bet they (and the case manager) would have lots of thoughts on what to plan for. Also see if there are any local or online support groups for parents of similarly disabled adult children. You are not alone in having to plan for these eventualities and it would be great to tap into others who are further along in their planning.
posted by cecic at 1:06 PM on December 29, 2013

Yes, you could very much benefit from speaking with a lawyer. That lawyer can talk through with you not only the options for distributing your financial assets, but also about setting up trusts and powers of attorney and other legal devices that could put your son on the path to greater independence now, as well as protect him when you're no longer able to. His brother should probably be involved in this conversation at some point, at least to determine what level of involvement he feels able to take on after your death, but for now, go see a lawyer who specializes in estate issues for caregivers of people with disabilities. If there are any local support or advocacy groups for people with disabilities, they may be able to refer you to someone good and experienced in this area.

Also, I think you need to sit down with your son's case manager and be very candid about your future plans. The case manager needs to know that after you are gone, there is not enough money to care for your son for the rest of his life, and that your son needs to be moving towards greater independence or searching for more resources to ensure that he is taken care of.
posted by decathecting at 1:08 PM on December 29, 2013 [3 favorites]

You mention him becoming independent, but is appointing a guardian another option for you? Someone who can be in charge of the money/paying the bills/handling his disability paperwork, at least for the immediate future?
posted by roomthreeseventeen at 1:09 PM on December 29, 2013 [2 favorites]

Lawyers who have experience with eldercare or working with people with mental disabilities will probably really be helpful to you. There is a short list of "things people usually do in these sorts of circumstances" that would be helpful for you to think over so you can think about the avenues that would be the most useful for you and your son. The local NAMI chapter should be able to refer you to someone useful and they have a very specific Special Needs Estate Planning Guidance System which is worthwhile. I know you are also anxious about your son's capacity for independent living, but I'd separate those issues from the immediate "What happens if something happens to me" planning that should be done sooner rather than later.
posted by jessamyn at 1:17 PM on December 29, 2013 [5 favorites]

You should never attempt to write your own will, or any other estate planning document, 'on your own' regardless of how your son is involved in running the household. You can look at forms online to see what kinds of issues a will covers, but it's never a good idea to just write one yourself because the law changes and also there are formalities you need to observe that sometimes cannot be addressed by a form you write up yourself.

Even lawyers pay other lawyers for this (I did). It is a bit overwhelming but that's why a professional is good, they will break it down for you and help you plan for whatever contingencies. You can ask the case manager or a support group/advocacy organization for referrals to attorneys who have dealt with similar families such as your own - it's not that uncommon, you should be able to find someone who has done this before.

the lawyer can tell you whether or not appointing a guardian is appropriate/necessary here.

You can get a simple will written by a lawyer for a reasonable fee. I paid $750 for a will, healthcare proxy, and letter of instructions. If something suddenly happens to me, my family would know what to do. I gave them copies of the documents and sat down with them explaining why I set it up like that etc. This is something you could do with your sons as well, and having a conversation about it might shake your dependent son out of the complacency a bit?

Could also make checklists now of what you do to maintain the house/pay bills/keep medical insurance going etc. Sit down and go over them with him and with your other son. You might also bring those lists to the case manager in order to get better advice on how to prepare your son to live alone - if the case manager knows specifically what your son needs to do, maybe they can make more progress.

Don't feel overwhelmed! Seek the advice of professionals and remember there are lots of solutions here because other people in your situation have already devised them. You just have to find what's the best fit for you. Best of luck.
posted by zdravo at 1:18 PM on December 29, 2013 [1 favorite]

I am writing from a sock puppet because I would like to keep the details of my family separate than my main identity on metafilter (for them).

If my background/perspective in this helps, my mother is a couple years older than you, and my sibling is close to the same age as your son and has many similar challenges,including one of the diagnosis.

For the inheritance part, a supplemental needs trust was created for my sibling (google to learn more about it, I am not a lawyer). It was the best solution for my sibling because it does not jeopardize her SSI or whatever the term is. If your son does not have this yet, I would also work on this, since my assumption are that was conditions would significantly disrupt the likelihood of working. To be honest, do go to a lawyer to do this right. You don't want to jeopardize your son's economic future. The money amount is similar to what you have and is not meant to support her but rather but rather to supplement her with things that she wants or needs (ie, dental care is not covered by medicaid),

These are the things that I have seen benefit my sibling, though she is on her own course so to speak (she has behaved similar to your son at times):

-A support group for the mentally ill (this has been phenomenal because they support one another and push boundaries to try new things; they also have likely friends who understand their issues vs. the rest of the world that does not).

-A therapist who will gently push my sibling's boundaries (I have tried to suggest things to my sibling, as my mother and often what we get is anger - the therapist can gently and repeatedly make suggestions and sometimes my siblings will try these things or change her point of view). To find a very affordable therapist, she went to nearby university that offered a sliding scale fee.

Those are the only things that I think can truly make a difference IMO, but that was for my sibling. You may want to check out the alliance for the mentally ill (NAMI), because they have support groups for families. I recommend them because you may be able to talk to other parents and family members who will suggestions for you.

For future home, you may want to consider section 8 housing for your son. It takes a few years to get to the top of the list, so you could get your son started with that process now. If anyone can talk to him about (your other son maybe? the case worker), then I would also let him know that he could potentially live in the house in the future, but he needs to learn what to do.


Good luck.
posted by Dances with sock puppets at 1:19 PM on December 29, 2013 [5 favorites]

The house maintenance stuff can be easy. In your shoes, I would hang a HUGE (like 8x4 foot) dry-erase board in the living room or kitchen, and do the following.

In permanent marker, create these headings: Month, Year, Decade.

Under each heading, I would write the tasks that needed to be done once a month, once a year, etc.
Underneath each task, I would write When:; Why:; How:.

So for example, the "Month" list could start like this.

Month.

-Pay water bill

When: By 5th day of each month
Why: If the water bill is not paid, the water will be shut off.
How: Each month, County Utility Company sends a bill to the house. Read this bill to find the amount due. Mail a check for the amount due to County Utility Company.

I would also include a line at the bottom saying "Amount due this month: ___" and then write the amount with a dry erase marker each month.

Ideally, if this hangs in your home for the next 20 years, he will absorb some of it, and even if he doesn't, he can always refer to it if he finds himself needing to take care of these things suddenly.
posted by cairdeas at 1:23 PM on December 29, 2013 [9 favorites]

It sounds like teaching via conversations is not the best way for your son to absorb information. I second cairdeas' idea for the visual boards and would consider creating other "teaching material". Would he read some instructions? Or watch a video where you show/explain stuff?

For the case of an unexpected accident/death people usually have one ring binder/box with all the relevant documents (will, insurance info, financial info, etc.). Would he check that big binder in case something happened?
posted by travelwithcats at 1:45 PM on December 29, 2013 [1 favorite]

is a lawyer necessary in these kinds of situations?

Unfortunately, yes. Might not cost you a ton of money though. Look into local legal aid options. Even if you don't qualify, your son definitely will. But setting things up so that a disabled adult isn't left completely in the lurch when his current caretaker(s) die(s) isn't something you're going to want to try to do on your own. You'll need professional help, including (but not limited to!) a lawyer.

Frankly though, sounds to me like the legal issues are the least of your worries. Getting the financial end of things taken care of won't help your son cope any better than he already is. This:

he does not seem to realize that someday I will be gone and he will be thrown in the deep end if things continue the way they are

. . . is a huge problem, and not one that a lawyer is going to be able to do much to help you solve. That's what social workers are for.

Though I should say that if you aren't your son's guardian, you should seriously consider trying to become so. If you want to teach your son about money but he's got a steady disability check coming in every week, the only way for you to do that is to take control of those funds. You'll need a guardianship order to do that, and a lawyer can help you there. It's only the beginning of the process, but it's a place to start.
posted by valkyryn at 2:14 PM on December 29, 2013 [1 favorite]

This only addresses part of your question (Wills, POAs etc.) but I thought maybe her attitude would inspire you.

http://getyourshittogether.org/

(I'm not suggesting you write your own will.)
posted by cda at 2:20 PM on December 29, 2013 [3 favorites]

Our daughter (my wife's, I'm step-dad) is high-function autistic, and one of Wifey's hardest decisions was to assign custodial rights to a guardian, a Catholic charity in our area. The judge, noting the change wasn't requested by social services or some other forced motion, asked, "And the mom doesn't want custody?" Wifey said, "I'm not going to be around forever," and the judge granted the change. Not only is this arrangement better for our daughter in the long run, but it's a huge stress-relief for Wifey. She still participates in planning meetings, the custodian and other organizations still listen to Wifey's input, but the custodian does a very good job of taking care of the details so Wifey doesn't have to. In your situation, it might not be so easy if he hasn't had outside full-time care, but it sounds like he needs at least part-time care, so you should get a social services organization involved now, before things get beyond your control.
posted by AzraelBrown at 3:10 PM on December 29, 2013 [1 favorite]

Dale Law Firm is a law firm specializing in these issues. I imagine you will be wanting a special needs trust and a guardian. There are resources out there. Don't be anxious, many have gone before you!
posted by ClaudiaCenter at 4:14 PM on December 29, 2013

IAL - consider a special needs trust if he is now, or might be after your death, on social security disability.
posted by BrooksCooper at 4:15 PM on December 29, 2013

I worked for agency that served adults with disabilities and I have some friends in similar situations.
- You absolutely need a lawyer to set up a special needs trust. Without a trust, (IANAL but this is my understanding - probably not exactly right), your son lose his disability benefits until he spent down any money that he inherited before he qualify for benefit again. With the trust, his inheritance can be used to supplement his benefits, paying for things that are not otherwise covered.
- Do you know about social security payees? You do not need to be a legal guardian to become someone's payee, although you do need to show that he is not able to mange his own money. Become a representative payee gives you the ability to receive their disability check and spend it on their behalf. Furthermore, there are organizations and agencies that will do this if there is no one in the family willing and able. His case worker should know local agencies that do this - I would imagine it would be a big relief to know you have that backup service identified.
- A support group of other parents is invaluable. You get many new ideas and realize you are not alone. For example, I know one mother who decided to stop coloring her hair and let it go gray in order to signal to her son that she was getting older and would dnot be there forever.
- Things are comfortable for your son. He isn't worried about the future. If you want things to change, you will have to provide firm and consistent energy. Once you decide what specific skill she needs, you will have to find an appropriate way to get him to them and a reasonable set of consequences to reward success and encourage his participation.
- In addition to NAMI, look for resources for people with disabilities and their families. Every state (in US) has a network of Independent Living Centers that might be very helpful for you and your son. If you are by any chance in the San francisico bay area, memail me and I give you a bunch of specific resources.
- Take care of yourself!!!!!!!!!!!
posted by metahawk at 4:41 PM on December 29, 2013 [2 favorites]

Check out NAMI

They may be able to assist in finding a lawyer in your area. As well as hopefully being able to point you to resources to further assist your son towards more self reliance with basic catres.
posted by edgeways at 5:06 PM on December 29, 2013

You need to set up a special needs trust. I think it would be worth paying for a lawyer for this, if that's possible, as you really want it set up well and they might see things you're not thinking of.
posted by The corpse in the library at 7:51 PM on December 29, 2013

Nthing others that say to get a lawyer to set up a special needs trust. If your son gets any state or federal aid and you leave him money directly, they will take it or at the very least cut off his benefits until the money is gone and he is broke again.

Also nthing others that say to check out NAMI and such for referrals to services. Meeting other people in your area dealing with the same issues can be extremely valuable as they've probably gone through a lot of this and can give you more specific advice for your location.
posted by wintrymix at 8:31 AM on December 30, 2013 [1 favorite]