By Tom Dooling
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.
Tom Dooling is a former staff attorney for Disability Rights Montana.