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My name is Tony Sampson, and I would like to talk about the difference between jobs and careers with people with disabilities and “normal” people.
For people with special needs, we have the three f’s: filth, food and flowers. For filth, you got custodian, housekeeping, OK, working in hotels, cleaning after animals and working in auto mechanics. Also, there’s food.
In this category, there is the following: working in restaurants like McDonald’s, and Burger King, where they flip hamburgers and make French fries and chicken nuggets. And also they work in dine-in, or full service restaurants like Denny’s or IHOP, where they, if they are lucky, become waiter or waitresses or bus people, which reverts it back to filth.
And finally there are flowers. They work in lawn maintenance, like mowing lawns, raking leaves, planting trees and gardening, planting and watering flowers and fruits and vegetables. They also work on farms and campsites.

On-the-job training

Another point I would like to make is the difference between two people. Joe and Will started at the same company. Joe has a disability. Will is “normal.” Joe got the job through his agency. Will got the job at a job fair. They both started at the bottom as lot attendants. They receive on-the-job training and raises every six months to a year. Joe works harder than Will. Three years later, Will gets promoted to supervisor, while Joe is still a lot attendant. Why is Joe still a lot attendant? Because he has been working hard these years. You see, his agency filtered his job, meaning stuff like college scholarships, medical benefits, and of course, promotions. Joe only gets a fat paycheck and biannual raises.
One other thing I would like to document is agency and government contracts. Some agencies have contracts with the government. Let’s talk about government contracts. People with disabilities who are on contracts do work on military bases, buildings and commissaries. What they do is clean military buildings and do housekeeping for personnel quarters. They stock shelves for commissaries. They do landscaping for military grounds. Some government contracts at NIH in Bethesda, MD, have people with disabilities do work in the mailing room doing filing and sorting mail and papers.
Other agencies have places of business as contracts or enclaves. Their policy consist of a 2 to 1 job ration. That means for every two clients a job coach must be present. Let’s say if he doesn’t like his job, then he’s stuck there until he can find a client and a staff to go to the next job with him.

A chance to advance

Also if a person is a client of a residential program, a large majority of that person’s paycheck will go into a special bank account to pay for his room and board, and he is given a fixed allowance of $100 a month.
Other agencies have contracts for hotels, and restaurants, but they have time trials. The 2 to 1 job ratios don’t give the client a choice of the job he or she likes, and it doesn’t give that person a chance to advance.
Now finally I would talk about careers. Careers are professions like doctors, lawyers, store managers, engineers, construction workers and computer technicians.
Because people with disabilities lack the proper (college) education, they also lack support (for the more higher functioning people who are smarter and more self sufficient) and lack time. Agencies just give clients remedial skills like putting nuts in baskets, cutting rags, folding paper into envelopes and putting coupons into newspapers.
You see those aren’t necessarily skills. The only reason people with disabilities do not get the proper college education to get the careers that they always desired is the they did not get enough of it when they were in high school. I understand that not all people with disabilities can have an education, but what about those with higher brain functioning skills?
They should be classified differently. I think agencies should spend more time educating the highly intelligent people with disabilities by teaching them math, English, job placement skills, reading and other placement skills to get them ready for the career world.

For people with disabilities, there’s the life that they live, and the life that they want to live. They live in group homes where they get good meals, clean beds, decent clothes and good vocational training, provided by their agency.
But they have to pay for their security. That means they have to be told what to do, like, for example, let’s say Joe wants to watch The Jay Leno Show, but his counselor won’t let him because it was past his bedtime. One other example would be Kelly. She works at a grocery store called Safeway. She works from 9 a.m. to 3 p.m. Monday to Friday.
Kelly leaves in the middle of the day on the days when she sees her therapist. Kelly is very independent, but her program does not allow her to leave her job site to go to a fast food restaurant like McDonald’s or Burger King, or etc., because of the rule of her being a liability (in other words, if any thing happens, they would be held responsible.)
One person named Richard just came from a previous program with a very self-sufficient background. I mean, he is a young man who lived on his own, was good with his money, well educated and he even has a learner’s permit to drive a car. Richard comes to another program to see if they can get him the life that he wants.
Richard thought that the program would be tailor-made. He figured they would get him a career, a family, a house, a driver’s license to drive a car, basically an adult life, but he was told his goals were unrealistic. Unrealistic?! Why don’t they tell him he couldn’t walk or talk? Richard’s therapist refused to OK the renewal papers to get his learner’s permit, because the person did not feel it was safe, and the person did not know him long enough, even though Richard had 14 hours left to get his license. Richard told his counselor that it was unfair that he was stripped of his learner’s permit. He not only stated that he knew all the rules of the road, he even went to driving school, and he even drove a car.
Then his counselor hit the roof and put his foot down and said, “I don’t care if you know every rule in the book. The doctor said you can’t drive, and that’s it! And as far as you’ve gone to driving school, and being behind a car and all, it’s not where you’ve been, it’s where you’re at!”
It was unfair that his counselor agreed against Richard instead of standing up for him. So here is Richard’s lifestyle: he lives in a group home with two mental roommates. The house counselors push him around. He has a high-paying job, but it’s a menial position, and he gets a fixed allowance. Richard is miserable.
Now here is the lifestyle that people with disabilities want. They want to have homes of their own. They want to have families. They want to pay the bills without Social Security and Medicaid. They just don’t want jobs, they want careers, where they can make $55,000 a year if not more. They want to drive cars. They don’t want it some day, they want it now!

Tony Sampson is an advocate who sets an example for self-direction. He has led the way in changing minds about who succeeds in self-directing their services. Sampson is a graduate of Leaders in Disability Policy and a former member of the Maryland Disabilities Council. He is seeking a position on his local commission on disabilities and on local self-advocacy boards and associations. He is a member of Shared Support Maryland Inc. Board of Directors. He has delivered many training sessions on inequity in the treatment of people with disabilities.

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 lawsuit, 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.

As one of Disability Rights Montana’s staff attorneys, Tom Dooling provides legal support to both the Abuse and Neglect and the Developmental Disabilities Services units. Tom also carries 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.

   People with disabilities who need help with some or all of their daily activities are often caught in a double-bind: what they need and bargain for is someone to help them live their lives, and what they get is someone to run their lives. Frequently they need help with some of the most personal of daily activities, mostly having to do with bathrooms.

   This necessary letting a staff person into one's most private life is difficult to do, especially when staff change. What becomes a real problem, however, is that staff sometimes seem to believe that a person who has given up privacy for reasons of taking a bath, has given up all privacy. Just because a person needs help bathing, in other words, does not mean that staff can walk into his or her bedroom without knocking. It is a rare and valuable staff person who is always aware of and sensitive to this difference.

   Privacy isn't the only right that suffers for the sake of obtaining services. A person with disabilities is having some pictures done at Walmart and it's taking way longer than it should.

   The staff person looks at the time and says, "we have to be back at the Center by 4, you're going to have to wait until tomorrow to get your pictures." Why do "we" have to leave because "your" shift change is at four?

   Person Centered Planning and Money Follows the Person, parts of Montana's funding system for people with disabilities, were instituted and created with the idea that the person with the disability "owned" the funding. That allowed him or her, perhaps with help from a case manager, guardians, friends and parents - mostly people picked by the individual - to decide where they would live, who would work for them, etc.

In other words, the person lived in the community and was given money to hire staff. These employees are to help him or her live independently. In practice, it doesn't seem to work out that way. The person, instead of renting an apartment and hiring staff, gets into supported living services and is assigned to an apartment which is run by staff hired by the community service provider, who then decide what "we're" going to do, when "we're" going to do it, and who "we're" going to do it with.

   All too frequently, people with disabilities have been viewed by others most of their lives as helpless or incompetent, and often come to internalize that baseless assumption. There is even a name for it, which is "learned helplessness."

   Helping staff and the person with a disability can, and should, make an agreement on the limits of the helping staff's duties, i.e. help get the wheelchair over the lintel into the restaurant, but don't decide on what the person who uses the wheelchair is going to eat, or how long they're going to be in the restaurant.

   Helping staff are employees, not supervisors, and if the funding system in Montana is not reinforcing and supporting maximum privacy, dignity and autonomy, the person with a disability has a legitimate and legal grievance.

As one of Disability Rights Montana's staff attorneys, Tom Dooling provides legal support to both the Abuse and Neglect and the Developmental Disabilities Services units. Tom also carries 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