A heart-breaking majority of people with developmental disabilities live far below the poverty line. Unless they get services from Medicare or Medicaid through the state’s community service waiver grants or other sources, they are limited to SSI or SSDI benefits.
Except in very unusual cases, these are less than $1,000 a month. In most cases, the money is sent to a “payee.” Sometimes the payee is a relative or friend, often they are appointed.
If you get services from the state, most of your SSI or SSDI funds are used to help pay for those services. Only a small amount of the money is doled out to you – something around $30 per month – to cover personal purchases. It is like an allowance that kids get, except it isn’t as much, and you don’t have much say how you spend it.
People with disabilities have two other sources of money: jobs and gifts. From time to time, a person with a disability will receive money from some other source: settlement of a law suit, a gift or bequest from a family member.
This lump sum becomes an “asset,” which often disqualifies the person who owns it from further SSI or SSDI payments. This lasts until the money has been “spent down” to less than $2,000, the maximum a person on disability may own.
The other choice is to put the money in a special needs trust. This is a complex legal document, and should be prepared by a lawyer. If you have a special needs trust, a trustee is appointed to invest and care for your money. The trustee also provides money to you for extras, things not necessary for shelter, food and medicine, but to pay for a phone, buy books, take trips or go out for meals. Your trustee is not usually the same person as your payee, and the two jobs should go to different people. Your trustee should listen to you. If you want money that is available in the trust, you should be able to spend it as you wish.
If you have a job, the money you earn is your own. Too often, people in services or institutions have jobs that allow them to earn only $20 to $50 a week. Sometimes, if you are working in a sheltered workshop or day services connected to your service provider, your income is given to your payee, who helps you decide how to spend your money.
Too often, providers and institutions will give you or refuse to give you your money based on your behavior – in other words, as a reward for good behavior or as a consequence for bad behavior. If this is happening to you, you should complain about it or get an advocate to help you. DRM is one place you can call.
Money that you have earned is yours to spend as you wish. It might be a good idea to get a bank account and have your paycheck deposited in the bank. That way, you don’t have to ask for permission to have and use your own money.
If you think you can hold down a “real” job, tell your team or advocate. There are many jobs people with disabilities can do that pay more than you can earn in sheltered employment. You can get training for one of these jobs. You can put the money in the bank. You can spend it however you want. Don’t let your team or anyone else tell you different.
Tom Dooling, former Disability Rights Montana’s staff attorney, provided legal support to both the Abuse and Neglect and the Developmental Disabilities Services units. Tom also carried lead responsibilities for issues regarding legal access to residents of facilities and their records, as well as issues relating to end-of-life choices by people with intellectual disabilities.