How to talk to my parents about my special needs brother
August 19, 2014 7:19 AM   Subscribe

I (24yo F) live independently here in DC and have a good life. I have a great full-time job that pays pretty well for someone my age, go to grad school part time, and have a happy social life. I have an excellent relationship with my parents, but I need to talk to them about how my special needs sibling (21yo M) affects my life in the present and the future. I get along very well with my parents, but I'm not sure how to broach this topic in a way that is productive and respectful.

My younger brother has severe mental and physical disabilities. He has the mental age of an infant. He does not speak or make eye contact. He rarely smiles or frowns, and usually has a neutral facial expression, so it's hard to know what he is thinking or feeling. He doesn't appear to recognize me or my parents when we enter a room. My parents feed him, bathe him, brush his teeth, shave his face (since puberty), clothe him, change his diapers, and attend to his every need. Yes, my parents have changed diapers every single day since I was born in 1990, with the exception of one kids-free vacation they took earlier this year.

They are really excellent parents (discussed here and here if you're interested). In addition to parenting me well, they are incredibly loving and attentive to my brother, and have a great marriage to boot. I do encourage them to look into respite care and the like, because I can only imagine how exhausted they must be after caring for him for this long.

Anyway, there are two big Brother-related issues I need to discuss with them:

1. Finances. My parents are not amazing with money, and while they do have life insurance and some money socked away it is not a huge amount. I will become my brother's caretaker when they pass away (hopefully not for 30 years or so!). I am absolutely not going to care for him myself - call me callous, but I am point-blank not changing my brother's diapers every day. The level of care he demands is expensive to outsource, however, and I worry that when my parents die I will be financially ruined by paying for his care. (My rudimentary estimates put his care in the $100k+ range per year, so unless I am really making it big I'll be in the poorhouse myself, even with gov't support and my parents' life insurance/savings.)

So, the first issue I need to discuss with them is money - how much exactly is there, how can we leverage it, what care options they've looked into already, etc. (They already know that I don't plan to keep him in my home and administer care myself, so that part won't shock or upset them.)

2. Family time. Because of my brother's special needs, I do not get to spend much time with my parents as a pair - I can count on both hands the number of times the three of us have done something fun together. Usually when I visit them I will Do Something Fun with my dad, while my mom babysits, and then later I Do Something Fun with my mom, and my dad babysits. The parent with me during this tends to feel a little guilty about leaving the other parent home alone with brother. The bulk of my visits are made up of my dad working while my mom and I stay home with brother and watch TV, since he can't go to the movies, walk far enough to really spend time outdoors, etc.

So, at the risk of sounding petulant, the second issue I want to discuss with them is family time. They aren't really young, and I want to get as much quality time with them as possible. In my view this is going to require preferably (a) occasional respite care for brother or (b) them ceasing to express their guilt at leaving the other one home alone with brother while they're spending time with me. Hearing about how hard it is for mom to watch him all day alone just makes me feel bad when I'm trying to hike or whatever with my dad, you know?

My parents are very approachable and I've always felt like I could take anything to them, but it's hard to broach this topic with them in a way that isn't overly emotional (and therefore unproductive). I know they've had a hard time of it with him, and I want to respect that while also asking that my needs and wants be taken into account as well. Any thoughts on how to frame my questions?
posted by schroedingersgirl to Human Relations (24 answers total) 5 users marked this as a favorite
The level of care he demands is expensive to outsource, however, and I worry that when my parents die I will be financially ruined by paying for his care.

Is this your worry, or the actual reality of the situation? Is your brother receiving any state or federal assistance--it certainly sounds as though he's eligible--that will continue once your parents stop caring for him? Have you talked with a disability advocate or other professional about what your legal and financial options are?
posted by epanalepsis at 7:26 AM on August 19, 2014 [3 favorites]

Social Security should cover quite a bit of the costs for caring for him.
posted by empath at 7:27 AM on August 19, 2014 [1 favorite]

Response by poster: Yes, he does receive state assistance. It is a quite small amount, however, and comes nowhere close to "covering quite a bit of the costs of caring for him." It is less than $800 per month.
posted by schroedingersgirl at 7:33 AM on August 19, 2014

Response by poster: And just to reiterate, my question is how to have this conversation with my parents. I am not looking for reactions to the financial situation itself.
posted by schroedingersgirl at 7:33 AM on August 19, 2014 [2 favorites]

Best answer: Can you talk about how respite will also help your brother? There may be benefits to your brother of becoming comfortable with others handling his care now, that is, while he still has the stability of his life at home with your folks. It could be terrifying for him to shift suddenly into another care scenario. Before your parents get too old to handle things well, it would be good to establish other routines with him so he learns that sometimes he goes elsewhere but everything works out fine. That way they could introduce respite into their lives--even if it started as simply day care now and then--and it would give you time with them and lay the groundwork for when you eventually take over.
posted by carmicha at 7:41 AM on August 19, 2014 [30 favorites]

They should be getting Social Security for him in addition to any state aid. You might find some helpful resources from the National Association for Retarded Citizens website. There are surely others in your situation and you may find good advice and support from them on how to help your parents.
posted by mareli at 7:41 AM on August 19, 2014 [3 favorites]

Best answer: While this is not directly related - I had a very frank conversation with my parents regarding their care a few years ago. My MIL had alzheimer's and was placed in a memory support unit, that was absurdly expensive - but the best care she could get. After this happened, I shared some of the financial details of the arrangement with my parents and used this as a jumping point to discuss long term care insurance for them.

What made the conversation go well -

1.) it TRULY came from a place of love and wanting to ensure the BEST care was available to them in their senior years. This is a sticking point, since there is a high risk of this turning into a "i'm not spending MY money to care for YOU" type of conversation

2.) My parents have always been very open about their financial decisions/status with me since i was old enough to understand the concept of money - so this was not a break from tradition. Not sure if you have the same relationship with your parents.

3.) My parents had dealt with the declining health of my grandparents and were already taking preventative measures to increase their health/quality of life (They're running in the Marine Corp Marathon this year!)

It sounds like from the way you asked your question that you have a loving and open relationship with your parents. So it may be an easy transition to discuss the long term care options available to your brother. I used current financials to springboard into a conversation about future financials, maybe that would work for you?
posted by Suffocating Kitty at 7:43 AM on August 19, 2014 [2 favorites]

Best answer: My mother is solely responsible for her younger sister, who is severely mentally and physically disabled (RH incompatibility before the age of rhogam). I brought up the topic of "What do I need to know about {aunt's} care?" a few years ago. It basically went like this:

"Mom, I know you're the only one taking care of {aunt}. But it's possible that she could outlive you, or you could become sick, and that responsibility will fall to me. Can we take some time to go over what all your responsibilities are, including financial ones, so that I have an idea? I'm not stepping in right now because you've clearly got it handled, but in case of emergency, I need to know where the important documents are, what I need to do to keep on top of everything, all that stuff."

She was surprised I asked, but we did sit down and go over all the paperwork, I got a copy of the safety deposit box key where the documents are kept, and I was added as a secondary to all of {aunt's} social security, disability, and power of attorney documents. As it turned out, mom was hugely relieved to have me ask her, because she could not bring herself to ask me. She was unwilling to burden me with it. But it's not a burden - it's information, and I needed to know, because it's family and I'm a responsible adult these days.
posted by juniperesque at 7:44 AM on August 19, 2014 [28 favorites]

Best answer: Since they probably understand the system better than you do, having dealt with it directly and navigated it for many years, part of the financial talk should probably be about that system. What government programs are available to help support your brother and provide care? You say he's receiving a monthly cheque, but I don't think the purpose of that checque is to pay for care, but rather to support himself outside of care (because US governments think people should be able to support themselves on peanuts if they don't work). In addition to that, there are likely programs to pay for or provide care directly, which your parents may be aware of. Medicare or Social Security (federal, not state, I believe) should be paying for the care he needs and it may well do that when the time comes.

On the point of family time, the answer is similar: Tell them you'd like to investigate what services are available to give them a break (just the two of them) and to give you all a chance to spend time together. Given the severity of his condition, whatever insurance he is on should provide nursing support -- someone to bathe him, someone to come care for him for a few hours every X. Ask your parents if they've looked into that or if you can look into it together. Ask if they'd be willing to have a social worker come in and evaluate your needs and what services you are eligible for. It sounds like parents have been going at it mostly alone for many years and as you say, they are probably exhausted. I think they would welcome an opportunity to find way to lighten the load without neglecting your brother.

Make it about how to help your brother, sometimes by helping them. The danger is that they may read it as your resenting your brother or being "petulant" as you say, but nothing you've said reads that way to me. Unless they have sensitivities on these issues (resentment on your part, unfairness to you, worries about when they die), then I don't think talking about it the way you've talked about it here would create any problems. If you think they are worried about those issues, then you should probably address them directly/explicitly: "I'm so impressed with how you've always cared for Brother and yet never made me feel like you didn't have time for me." or whatever, to set the tone that it's not about that and they should not worry about that.
posted by If only I had a penguin... at 7:47 AM on August 19, 2014 [1 favorite]

I also have a severely disabled sibling who lived at home until she was about 26. (She's now 30.) She went to special education programs/school until she turned 22 and now attends an adult day programs, paid for by the state of Florida*.

There were a lot of factors that weighed in with her move out of the house:
-My mother was her primary caregiver and was getting arthritic
-My mother knew/acknowledged that she was not going to live forever and needed to get my sister into a better situation before the inevitable happened, rather than an emergency placement situation.
-My mother wanted a life that was free from caring for another person.
-My sister needed more support-- physical, emotional, therapeutic-- than my mother alone could give her.

And the two most important parts:
-My mother had applied for the funds from the state (I can give details, if needed) that would allow her to 'pay' for my sister to live in a group home (the caregiver's actual 5 bedroom home in the suburbs), attend adult daycare services and transportation.
-My mother did not want *me* to be responsible for the day-to-day care for my sister at any point in time. I will, however, be her guardian when my mother passes and my mother has provided me with all the necessary paperwork (again, I can give details, if needed) to help be her advocate when the time comes.

Your brother needs to move out of the house, both for your sake and your parents. If your parents pass and your brother is living outside of be home for the first time then, things are going to be much, much harder on everyone than if they move him out now and you can all go visit as often as you can/like.

The money-- life insurance or otherwise-- that your parents have will never be enough, truly. It's hugely expensive and unless they each have multi-million dollar policies, it won't cover everything for the duration of his life. He's 21 now-- what if he lives to 80? What if he has a major health crisis**? Hell, what if your parents do and they have to tap into their own savings?

This is a big deal, but it's great that you're thinking about it. Feel free to memail me.

*Florida is a notoriously terrible state, so applying for funds and getting services has been a challenge but this is truly a state-by-state thing.
**Your brother almost definitely qualifies for Medicare, but even that may not cover everything/is a big PITA.
posted by Flamingo at 8:00 AM on August 19, 2014 [5 favorites]

Your brother would probably need any inheritance or maintenance money left to him in trust, seeing as he can't use the money directly. Specifically, your parents either have or will set up a Special Needs Trust for him, which protects the money in specific ways (w/r/t taxes). Your parents will probably want to stipulate that after they pass, you (and likely the lawyer who set up the trust) will be the trustee(s). There are some lawyers who specialize not only in trust and estate work, but in special needs trusts specifically. I worked for one in Baltimore a few years back, and feel free to memail me if you'd like the name.

Even if your parents already have a lawyer that they use for estate planning, they/you might get a lot out of talking to someone who is used to being a trustee on cases like this (or that person's legal assistant!), because a trustee will often know a whole lot about how the finances work for someone in your brother's situation and what organizations to contact for guidance and help (the recommendation above for the National Association for Retarded Citizens is a good one). Respite care is something that comes up *a lot,* so even getting in contact with those organizations now (if you haven't already) might be useful, in terms of setting up things like respite care and convincing your parents to use it.

In fact, you probably need to talk to them about a lot of estate planning issues, including any property that your parents own. If they own a house or condo, will your brother live in it after they pass, and if so, how can it be put into trust? There are a lot of financial questions like that that only a lawyer can answer and draw up the wills/trusts/contracts for, so personally, I think that you need to broach the estate planning topics specifically. If you're comfortable talking finances with them, maybe also ask about whether you can go with them from now on when they see their attorneys or accountants. My mother has done this as much as possible with my grandmother, and it's been extremely helpful.

Also, where do you parents live? In Virginia, your brother would be entitled to schooling through the public school system until age 23 -- not sure if that's true in other states. I've subbed as an aide in classes with kids with disabilities that seem quite similar to your brother's (also in Virginia), and it was de facto respite care. Have your parents explored all the options w/r/t public services for your brother? If they haven't or haven't been able to do that thoroughly, maybe you could do your own research? Even though public services are probably never going to be enough to support your brother, it sounds like he's receiving a *very* small amount of (public) support right now, and I wonder if your parents are being too proud or nervous or something to look into trying to get as much public support for your brother's care as possible. I don't know that you need to or should broach that topic with them right now, but it's a place you might want to do research, and if it turns out there are any even very small opportunities for more support (not just cash/checks, also in terms of respite care, vouchers for housing/food/health care, etc), you might talk to your parents specifically about those opportunities.
posted by rue72 at 8:11 AM on August 19, 2014 [6 favorites]

Best answer: "Mom, Dad, you both do such an amazing job of taking care of Brother. But it worries me sometimes that you've been doing so much, for so long. None of us is getting any younger, after all. Do you think that we could sit down together some time and look over what options we have for making sure that he'll always be well cared-for?"
posted by Zonker at 8:17 AM on August 19, 2014 [5 favorites]

Best answer: To the family time question: would it be possible to talk to your parents about setting up a regular visiting routine? By that, I mean something like "Every first Saturday of the month let's plan an outing." The reason I think that might be helpful is that it is a long-term plan that they can use to think about long-term solutions, like getting a once per month respite caregiver, instead of planning things on the fly.
posted by megancita at 8:33 AM on August 19, 2014 [2 favorites]

Best answer: My partner is a case manager for adults with developmental disabilities. My understanding from what she has said about her work is that parents of adults with DD get some subsidies from state & federal government to care for their children, but that adults with DD who are not being cared for by their parents typically are cared for in group home settings. It may be worthwhile for you to look into what your brother will be eligible for if he is "on his own" rather than being cared for by your parents -- it may be more $$$ in services than what he is eligible for today.

Also, at least in the state she works in, there is "respite care" available for caregivers. That also might be something to look into.

I find that having information helps me to have more productive conversations and also reduces my fear and anxiety level.

Regarding how to have the conversation itself, perhaps Crucial Conversations might have some good ideas...
posted by elmay at 8:39 AM on August 19, 2014 [1 favorite]

I'll tell you what I learned at a National Down Syndrome Congress conference (my daughter, 11, has Down syndrome).

First, discount everything that follows and talk to an estate planning attorney.

Second, you don't have to take care of your brother. Likely, he will become a ward of the state and will be taken care of by a state agency for the remainder of his life.

Third, if your parents are planning to leave any money or anything of value to him, they need to change that. They should either (1) leave everything to you or (2) create a special needs trust for him. The second is more likely the better choice.

In short, when he becomes a ward of the state, any assets he has will be seized by the state. The care he receives will be funded by whatever budget the state has for him and is not in proportion to what has been seized.

Setting up a special needs trust is easy - it takes about a half hour of time with a competent attorney. Once the paperwork is done, you have to get a federal tax ID from the IRS and "fund" the trust (in our case, we opened a simple bank account under that ID and deposited a small amount of funds).

Now funded, the trust is responsible for paying taxes (which should be minimal if any) on interest.

Your parents would be able to leave assets to the the trust in their will and upon their deaths, the trust will now be active for your brother and anything beyond the bare essentials of life provided by the state can be funded through the trust.

As to how you broach it, you might take some time with your parents and start asking honest questions. "mom, dad - I'm worried about my brother long-term. What kind of planning have you done for him?" Let them talk and listen. Follow questions might be, "what will you do when you're not strong enough to move him?" or "what will you do if my job takes me out of reach?"

By all means look into respite care. Every state is different. For example, in my area in Massachusetts, there is an organization that provides funds for respite care and resources for finding qualified people. See what you can get. "Mom, dad - I know that our family is unique and that you have both committed so much love and energy to my brother. I respect that so much - you guys are incredible. I also see how tired you get. I looked into respite resources and here's what I found in this area - what say we set up a date together and I'll take you to ____." When it's done, you can ask if they would like to do it again.

You might also contact the Sibling Leadership Network for help in how to start this dialogue. FWIW - I looked for that by searching for Susan P. Levine who co-wrote a book with Brian Skotko specifically for siblings of kids with Down syndrome and while that book is not helpful for your as it is geared towards someone much younger than you, this topic has come up in a workshop with them. SLN looks like a much more general organization.

Best of luck.
posted by plinth at 8:54 AM on August 19, 2014 [21 favorites]

In California, the agencies which coordinate the care of the developmentally disabled/special needs are called "Regional Centers". In this system (and I suspect your state has an analogue), brother will have an advocate/case worker within that regional center who coordinates resources, SSDI (Social Security Disability Insurance), state health programs, other grants and programs available to your brother.

These resources are sufficient to maintain him in a home, the level of care and the exact circumstances will vary depending on his needs, in the case of Mrs. Straw's younger brother who has a mental age somewhere between 2 and 7 depending on what we're measuring, this includes living in a detached home with several other special needs adults, at least one full-time staff member on site at all times, and a day program.

The home also often has other enrichment programs, sometimes multi-day trips.

If you want to be involved in the regular management of your brother's care, in the absence of your parents you'll petition the court to become a "Conservator", which means you get the legal power to make almost all decisions about your brother's life (and get access to medical records, financial records, etc), with the caveat that the court will have someone check up on you and him regularly to make sure that you are actually executing your duties (this isn't onerous, it's usually a telephone conversation with you, and interviews with the other caretakers in his life to corroborate).

Something to keep in mind should you choose to become a conservator: You can, indeed, prevent abuse by careful monitoring of the home and programs he's involved in, and this does happen, but they also have systems and procedures in place to manage such clients effectively, and a home, even a fantastically good home, may say "you know, this conservator is too much of a pain in the ass to deal with, we're going to ask the advocate to move the client". So your job as such is to work with the various organizations providing care to find reasonable compromises, not just to dictate requirements.

Often parents don't put a special needs child/adult into such a full-time program because the resources available to take care of that person help supplement Social Security or other limited retirement income. So understand that that's part of the equation, if you find that they're reluctant to move him into a group home or other care facility.

tl;dr: Don't sweat it, we do have a social safety net for the developmentally disabled in this country. There's never enough resources, but it exists. Your parents almost certainly are already involved in it. You should still educate yourself, because you care.
posted by straw at 9:14 AM on August 19, 2014 [5 favorites]

Best answer: A "third force" in this conversation might really be helpful -- like some kind of social worker -- who can help keep the focus on the financial and practical details. His doctor or physical therapists (or whatever kinds of health professionals are involved in his life) might be a place to start to find that person.
posted by pantarei70 at 10:24 AM on August 19, 2014 [2 favorites]

Best answer: The real issue, I think, is that your parents are not going to die simultaneously. Once one has died, the entire respite system that they have now (since they seem to tag-team his care) is gone. That is something they should have a plan in place for. You don't have to go in with both guns blazing and news of their upcoming deaths but I would frame the conversation by saying, look, you're not going to die for another 30-40 years, but you COULD fall and break a leg, have a kidney stone, get in a car accident. Do you think we could start by having a respite caregiver come in for four hours one Saturday a month? Because if there is a sudden health problem and one of you is in the hospital -- even for a simple surgery -- we will need someone who is familiar with Brother's care to step in and help.
posted by kate blank at 10:28 AM on August 19, 2014 [9 favorites]

Best answer: I think #1 has been well-covered. As for #2, what exactly does "quality time" mean to you? Same thing you do now, except your parents don't express guilt? Time with you and both of your parents, while your brother is with a temporary caregiver? Instead of watching TV all day with your mom, you two cook or play games together? I think you need to identify what you want, and come up with some reasonable proposals for your parents. Then tell your parents how you're feeling and exactly what you're asking for, while acknowledging that caring for your brother is a significant burden and they may not be able to give you what you're asking for.

For instance, "Mom and Dad, I really value the quality time we have together, and I appreciate that you each make such an effort to spend time alone with me when I come visit. I know that's difficult for you since Brother requires so much care. I feel a little selfish saying this, but when we're together and you keep saying how guilty you feel because you're not taking care of Brother, it makes me feel bad. I would love to spend some time with you without feeling like you don't think you should be there. Even if you're feeling guilty, could you just not tell me?" or "Mom and Dad, I'd love to have some more quality time with you. Do you think it's possible that we could spend some time together, all three of us? I know Brother needs a lot of care, but it would mean a lot to me if we could all [___] together next time I visit. Would you be willing to have a respite caregiver come over for a few hours so we can do that?"

I'm sure that whatever guilt they feel over caring for your brother, it hasn't escaped their attention that quality time with you has suffered. I guarantee you they feel guilty about that too. So I would focus on being very straightforward and matter-of-fact about your request, and making sure they know you think they are terrific parents and you support all their efforts on behalf of your brother.
posted by chickenmagazine at 1:57 PM on August 19, 2014

This is a bit too close to home, but do check that your parents have done the right estate planning, including a Special Needs Trust (or Supplemental Needs Trust), as pointed out upthread. This is worth sorting out with someone who specializes in such trusts, not just a regular estate planner.

Medicaid (probably not Medicare) will pay for your brother's full time care in a group home, or possibly at home through various waiver programs (varies state by state) but does require a certification that he (not your parents, just he) does not control any significant assets. A special needs trust is set up to specifically work with this requirement and supplement, not replace, his care provided by the state.

Then there are SSI payments for disabled adults, and as carers for a potentially independent adult, caregivers are also eligible for payments in lieu of what the state would spend to keep him in a nursing home. Your parents are probably aware of these resources - I would hope that the county service coordinators have made sure of that...
posted by RedOrGreen at 2:29 PM on August 19, 2014 [1 favorite]

For topic #1, I'd just tell them you are doing some financial planning and getting organised for retirement, and you need to make sure there are plans in place for your brother as part of that. Straight up ask them what plans are in place for his financial needs after their deaths. It is no secret that people die, so just... have the conversation.

Your parents may have life insurance, of which you are the beneficiary, specifically to help you cover the costs of your brother's care. Your brother should not be the beneficiary as the assets will complicate his state and federal entitlements. There are a lot of variables, like trusts etc, and I am not a financial planner but you may as a family want to consult one.
posted by DarlingBri at 2:57 PM on August 19, 2014

Response by poster: Thank you so much for the answers! I've "best answered" those answers that actually addressed my question of how to talk to my parents about this, instead of attempting to explain how the system works. Your advice was incredibly helpful and I'll be putting it to good use when I talk to my parents about this issue. Thank you so much!

Since many of you seem worried about this, let me just say that my parents are not idiots - they understand the system and are getting the full government benefits available to them. (It may seem low to you, but my understanding is that this is in part a symptom of the fact that Brother lives with them rather than "independently.") They already have a lawyer who specializes in these issues. The legal paperwork is already in place making me his guardian upon their deaths.

I left out these things because they frankly aren't relevant to my question, which, again, was about how to frame this conversation. Shame so many answerers decided to patronize rather than help.

posted by schroedingersgirl at 6:08 AM on August 20, 2014

You can express to them your desires regarding your brother but please keep in mind the decisions on how they handle his care and what they do are theirs, and if they continue to make different choices than you would like, you may have to accept that.

(an aside-the answers you didn't want might not be helpful to you, but they most assuredly may be helpful to someone else in this situation who might read the thread later. It would be gracious if you could be okay with that.)
posted by St. Alia of the Bunnies at 7:53 AM on August 20, 2014 [6 favorites]

I have a disabled sibling who is able to work a few hours a week and gets Soc. Sec. Disability. Please listen to people who tell you the $$ will need to be in a trust set up by someone who specializes in this. If a person has assets, the assets must be used up before they will get Soc. Sec. My brother's Soc. Sec. was jeopardized at one point, causing massive hassles and stress. My Mom generally did a terrific job of making sure he'd be cared for.

Start talking to them about what it's like for them to care for your brother; I'll bet they have a lot to share. Do some research to find someone who could do respite care so you could spend some time with them, maybe take them out to dinner. Once you start talking to them about your brother, it will get easier.
posted by theora55 at 8:23 PM on August 20, 2014

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