Cooperative Living on a Disability Income

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Artwork: Beth D’Angelo

How cooperative living will and won’t affect Medicaid, Medicare, Social Security, food stamps and other benefits for people with disabilities.

If you are here reading this page, that means you read the article in Communities Magazine, and were interested enough to come all the way to this site. Thanks!

Here are a few special considerations that it is good to think about before moving to community – or before moving anywhere, really. For that matter, you might want to think about some of these things even if you are just staying still.

First things first

Before you read anything more, you are going to need to know the difference between SSI and SSDI. Otherwise you are going to spend the rest of this page (and possibly the rest of your life) being mighty confused: How to Understand the Difference Between SSI and SSDI Without Making Your Head Explode

Food stamps

Many communities share food and this is often an integral part of community life. This is bad news for food stamps.

Food stamps will consider every person you share food with to be a member of your food stamps “household”. Food stamps does not really care who you live with. They care who you eat with.

If you join a community of 100 people who all eat together regularly, then all 100 people are going to have to go down to the food stamps office with you and sign up for food stamps together. Even if all 100 people were willing to do this, the chances of qualifying this way are… I would say… nil to none.

When you join a community, you may decide that life there is just so great that it is worth giving up your food stamps. Or you may decide to purchase, store and prepare your food separately from other people and keep your food stamps. Or you may look for a small group of low-income people and apply together.

Learn more about food stamps and special rules for people with disabilities: How to Get Enough Food Stamps to Actually Eat

Health Insurance

If you have no health insurance right now, and you are considering moving to a community, you can move to any state you want! You might as well move to a state that has expanded Medicaid.

SSI

If you are on SSI, the amount of rent you pay is going to be very important. If you join a community with an alternative financial arrangement, you may wish to work things out so that you are still paying rent. Learn more about.

You are allowed to share food with others and this won’t affect your SSI check, BUT you must pay for your share of the food.

Think twice before signing on to be part of any communal or cooperative business. SSI has an asset limit. You cannot own more than $2,000 (single person) or $3,000 (married couple).

Even if the business has no cash value and makes no profit, still think twice. If you are part of a business, Social Security may consider that you have gone back to work and this may come up during your next medical review. If you are actually working at the business, then you definitely want to notify Social Security about your work as soon as possible. If you are not actually working there, signing on to the business may not be the best idea.

Also think twice before signing onto any community property. You are allowed to own one house that you live in. That’s it. You are also allowed to own one car. That’s also it.

Here’s everything else that you never thought you wanted to know about SSI but you actually do want to know: How to Stay Out of Hot Water with SSI

SSDI

If you are on SSDI, you have a lot less to think about. Social Security really does not care what you do financially.

One thing you do want to be mindful about is signing onto any communal or cooperative businesses. If you are part of a business, Social Security may consider that you have gone back to work and this may come up during your next medical review. If you are actually working at the business, then you definitely want to notify Social Security about your work as soon as possible. If you are not actually working there, signing on to the business may not be the best idea.

Location, Location, Location

SSDI is exactly the same everywhere you go. SSI has slight variations. Some states add a small supplement to SSI checks. The amount is quite small everywhere except California (those whacky Californians give you and $150 and then don’t let you apply for Food Stamps).

SSDI will allow you to live in most other countries. SSI will require you to stay in the US.

Medicare

If you are in a Medicare Savings Program, then you want to be careful about your income and assets. See notes above on communal cars, businesses and property. If you don’t know if you are in a Medicare Savings Program ask yourself this question: When I go to the doctor do they charge me money? If the answer is no, you are probably in one. How to Escape Medicare Fees

Medicaid

The rules for Medicaid vary quite a lot by state. If you are on SSI then all you have to do is follow the SSI rules and you keep your Medicaid no matter what. See above.

If you are on Medicaid, but not on SSI, then you are getting Medicaid through the state. Every state has completely different Medicaid rules and they are constantly changing. The best you can do is research the rules in the state you want to move to and then hope those will still be the rules tomorrow.

Home Care

If you are receiving (or hoping to apply for) home care services, you should know that programs vary wildly by state – and sometimes they even vary by town or county.

In some areas you can get assistance in your home for cooking, cleaning and shopping. In other areas you can only get assistance with personal care, such as bathing, eating, and dressing.

In some areas you can be partially functional and still get home care. In other places, you need to be half dead to qualify. I’ve met people who got as low as 5 hours per week, and people who got as high as 70. I’ve seen states with waiting lists of a year or more, and ones where you can be in the program in two weeks.

Bottom line: You are going to need to do a little research. Unfortunately, I don’t know how to tell you to do this. I know what not to do: Don’t hope to find this information online. The best I can tell you is to start making calls to home care programs and hope to find a Social Worker or caseworker who will share information with you. Learn more about home care programs.

You can also check out this ranking of home care and disability services in different states.

Privacy

Some people on benefits choose not to tell anyone. In this country right now there are a lot of prejudices about poverty programs (you may have noticed). Only you know what is best for yourself and what you feel most comfortable with.

Some communities are very intertwined. Others are more autonomous. Some have more privacy and some have more sharing. As a general rule, if you share information about your life with some people, you can reasonably assume that sooner or later everyone will know, including people who you have not yet met. You’ll have to decide for yourself what you feel is best.

The joy of community is meeting people who will really know you. The heartache of community is meeting people who will really know you.

Thanks for reading. Happy home hunting. Hope you find the community of your dreams.